Austin's Hodgkin's Journal

Now what?

2009-02-23T17:23:00.000-08:00

"Austin's personality causes him to moderate feelings of happiness, so that he does not feel like he is making the mistake of assuming that things will remain good forever. This is not pessimism, but rather a desire to have his emotional state be rational and acceptable to his intellect."

A quote from one of Barbara's comments. It perplexes me that I cannot deny or verify this... it has the scent of truth, though. Is my level of self-awareness sub-par, or are there insights that aren't so readily available from the inside looking out. I think maybe neither: Barbara just knows me pretty damn well.

Anyways... I'm doing well; getting back into the swing of school. It's funny how school is like a trampoline wall -- the harder you push, the harder it pushes back. Sure, I can make it through school with an easy push... but I *want* to work hard right now... I *need* to... and school, it's pushing back.

But that is what is so great about school. You can *never* do enough studying, so there's always something to do. It's not like a movie or video game -- when it ends, you say to yourself: "Now what?" With learning, it just doesn't end.

I've pretty much forgotten the whole cancer thing. All it means, at this moment, is getting up at a dreadfully early hour and getting zapped for a few minutes. 8 more to go and I'm done.

I get the feeling that this sort of victory is anticlimactic. Funny, that.

As for my memories. Everything was relatively easy, except for the BMT.
The BMT is something I just want to forget forever -- except for those beautiful moments that make me feel love. I remember Barbara playing Chopin on her laptop... talking with Liz via my computer... watching her knit... watching Barbara knit... and, of course, many moments with my Mom. But most especially when she wheeled me outside, late at night, when I was low. Those moments make me smile. They also make me feel guilty for not expressing my love enough... for not excessively iterating my appreciation, gratitude, and love.

But, with the good comes the bad. I try to forget, but whenever I think about it in detail, I end up in an emotional funk for the rest of the evening. Thank god I have a few beers in the fridge and an episodes of House and 24 coming up.

Lastly, now that I have distanced myself from Stanford, I can do what I've always wanted:

Austin's Review of Stanford Hospital
Not being an expert, I can only draw from my experiences from a non-Academic hospital (Alta-Bates) and Stanford.

Surgery:
Stanford: D-
     (Surgeries Done: Port Removal, Hickman1, Hickman2)All surgeries were painful and I remember most of the procedure reporting the pain. There was also that time where the nurses were dancing/singing and acting irresponsibly -- they even tried to get me, a drugged patient, to sing. Also, my first Hickman catheter was not installed right and needed to be replaced. But they eventually got it right.
Alta Bates: A
     (Surgeries Done: 2 Biopsies, Port Placement) Surgery was a snap; I remember very little, and felt no pain. No complaints!

Inpatient:
Stanford: D
     (Inpatient for Chemo, BMT) Some of the nurses were great, some of the nurses weren't as attentive, some just had plain attitude problems. I think, generally speaking, they were understaffed or something. Also, I (and my mom) caught *many* medical slip-ups. The doctors knew their stuff; they did good.
Alta Bates: A+
     (Inpatient for ICE) The nurses were AWESOME. Everyone was super friendly and on top of their game. I had the room to myself for both occasions. The only fault is on the referring doctor, for not submitting the chemo orders on time, but that's not their fault.

So, in conclusion, and based on my experiences...
STANFORD HOSPITAL SUCKS

Ah, it feels good to say that. I felt I would jinx myself if I said that while I was visiting campus. Now maybe their treatment did a better job of getting rid of cancer than anywhere else... but if I could do it all over, I'd get my BMT at Alta Bates. Hopefully, of course, on the same regimen.

Ok, enough for now. Bye.

[1-20-09] Day One

2009-01-20T18:21:00.000-08:00

[6:21pm]
     The results are in: my scans are clean. Well, as clean as we can detect, anyway. My doctor tells me that "The fire is out, but we can't be sure that there aren't any hot embers just waiting for a gust of wind to flare up. That's what the radiation is for... those embers that might be lurking."

     But, as of now, I've done all that is required in hopes of a cure. My doctor tells me that if a relapse occurs at any point, then the strategy is no longer curative. The options become more scarce.
     But right now, I am in remission. My doctor tells me that, if I stay in remission for 5 years, he will pronounce me statistically cured. Basically, I have 1779 days left until I am free from the threat. The other milestone along the way is after two years of remission -- most Hodgkin's that do relapse, do so in that period. Today is day one.

     It's also the first day of school for me. It's hard for me to return... again. All those emotions and ambitions returning... Time to succeed.

     I also saw the radiation oncologist a few days ago. I have the "set up" scan scheduled in a few days. Then daily radiation for four weeks. It will probably start about a month from now.

     Funny how "Day One" is 9 days short of my cancer discovery. 1779 to go.

     As of now, my blog is scheduled to be updated "whenever I have something to talk about."

     Philosopher of the day: Epicurus (He's not what you think).

[12-31-08] Return

2008-12-31T13:02:00.000-08:00

[1:02pm]
     Ah, yes. Michigan was good!

     The trip there was quite an ordeal: Two flights delayed 3 hours each made for a travel time of about 12 hours. I was in the middle of a crowded airport, waiting for a flight, with sick people among us -- I smile to think what the nurses/doctors in Stanford would say to that.
     Basically, I expected to get sick during some point of this trip... cold weather, snow, airplane travel, travel strain. But I didn't (other than a few sniffles)!

     And I got to meet Liz's family for the first time! Great people -- I really felt welcome and enjoyed their company. Plus, Liz's mom really put together an amazing amount of excellent food! Real Christmas dinners! I'm not used to the whole sha-bang.

     It wasn't as nearly as cold as I thought it would be, but there was snow. A white Christmas, indeed. But, it's good to be back. Time to unwind.

     I also had an appointment with my local oncologist today -- nothing new, or anything -- just scheduling a Pet-CT scan and referral to my radiation oncologist. Nice to not have to waste a whole day for a 20 minute appointment.

[12-29-08] Return

2008-12-29T20:14:00.000-08:00

I just got back from a very long trip from Michigan a few minutes ago.

Dead tired. Will post all about it tomorrow.

[12-22-08] Christmas

2008-12-22T15:48:00.000-08:00

[3:48pm]
     I saw my family on Saturday... it was nice. I kinda surprised myself: I wasn't nervous in the slightest. I've gotten so entirely used to my bald head, my diagnosis, prognosis, and all that... that I'm totally comfortable with it, even if others are not.
     Regardless, everyone was real friendly and it was nice to see familiar faces.

     Now, in just a few days, I get to see some new faces in Michigan! I'm totally looking forward to it! My greatest fear is the cold -- I'm such a California wimp when it comes to cold weather. In fact, before the BMT I know I was more resistant to the cold. Or am I paranoid?
     It just seems that everything changes after the BMT... mentally and physically. No wonder they call it being re-born.

     Happy Holidays!

[12-15-08] Appointment

2008-12-15T21:27:00.000-08:00

[9:28pm]
     I've learned to dread my Stanford appointments... not because of anything medical, but because of the tremendous amount of time wasted. Today, surprisingly, wasn't too bad -- only a couple of hours of waiting. Still, I think about a recent house episode: A random character freaks out and smacks the table because, "I've been waiting for over an hour."
     Pfft. That's nothing :P

     My true nemesis was the rain. At the last minute, I discover that it is going to rain on Monday. I had no choice, and there was too little time to figure out some sort of other means of transportation... so I had to drive the motorcycle to Stanford.
     Not fun at all. The cool part was that I bought some really heavy duty construction rainproof gear in preparation for the trip. So I didn't get too wet. And, entering the clinic with the Darth Vader mask and a bright yellow jumpsuit got some odd looks.

     OK, onto the important stuff. The CT scan I received on Friday was completely clear; there was no sign of fungal infection in the lungs. So that's good. And the really good news is that I should only need one more bone marrow biopsy! And it can be from 6 to 12 months from now! Of course, why was I incorrectly told that I needed a barrage of biopsies in the first place? These medical professionals should use words like "I believe..." or "Typically..." instead of "You will have..." when there is uncertainty or just plain guesswork.
     I digress.

     Other than that, I should start to see my local oncologist and have a Pet-CT in three weeks or so. And that's about it!
     Hmm... Why couldn't this appointment have been skipped entirely, and the news been delivered on the phone? Oh well, I'm just glad the Stanford phase is officially over (though I have a few remaining appointments, for some reason).

[12-08-08] Format C:

2008-12-08T15:09:00.000-08:00

[3:09pm]
     I just cleaned my room and fully set-up my workspace. In other words, as of now, I am fully moved in. It always takes longer the first time... a lot of asking "where should I put this?" The next time, everything has its place and the cleaning goes a lot quicker. So I think it's a milestone of sorts... and I've been putting it off since I moved in.

     Also, in the digital realm, I formatted my computer's system drive today. After a year or so, my computer gets quite... disorganized. I find that wiping the system drive and reinstalling the applications I use is the quickest way to get re-organized.
     And I want to get organized. I want to get to work! I want to produce! The first step... is creating a clean workspace. Another milestone of sorts.

     This all is a manifestation of my desire to return to the real world. Time to go from escapist gamer to student (more casual gamer). Time to get ready for college, graduation, and apply myself for success in the real world... again. Time to put cancer in the background.

     Of course, there are times where the cancer/treatment is unavoidably in the foreground... like when my radiation treatments start in a few months. But, until then, I am allowed certain some freedom in not having an appointment every other day. So, I think I'll use this downtime as an opportunity to give my mind a break and spend less time thinking about the cancer.
     It's a change of mental posture. Time for a relaxed stance.

     This includes my blog, of course. I'm not really thinking about it as much, and I certainly don't want to try to think about the cancer... that's like dwelling on it. So, I'll just say less... that is, unless there is an event/appointment or something that gives me something to talk about.

     Accordingly, I'm going to reduce my posts to every Monday until my radiation treatments start. Of course, I'll also post as soon as I can if there's any news or events.

     That being said... see ya next week for my (supposedly) last Stanford appointment!

[12-05-08] Michigan

2008-12-05T19:26:00.000-08:00

[7:26pm]
     During the many hours of wait on the day of my Monday appointment, I had a lot of time to talk with my grandmother. I recall her asking on various subjects: "Are you allowed to ...," or "Can you ...," or "Will you be able to ..."
     I remember defiantly answering "yes" to all of those questions. At first, she would give me a perplexed look and I would have to clarify: "Yes I can do that, but the doctors say that it is not allowed." And again, "Certainly, but it is not recommended."
     Soon, she was rephrasing all of her questions. No longer was my freedom in question... instead, it was my choices or the doctor's recommendations that was in question. It was a good feeling.
     Even if you're not being defiant, just changing your perspective can mean a world of difference. Say you technically have fourteen days remaining before you are supposed to go outside without your mask. There's a world of difference between "I can't go outside without my mask" and "I have chosen not to go outside without my mask." The latter implies freedom.
     If you still have your freedom, then that's one less thing the cancer has taken away.

     As you may recall, I was told not to fly to Michigan for Christmas holiday. I wasn't given a recommendation, I was told not to fly. Well, I want to go. In addition, I don't think it's a stupid decision. If I do get sick, I'm sure I'll pull through fine... it may just be a bit more prolonged and annoying that others may experience. Flying may slightly increase risk of medical trouble, but isn't that life? And I feel like living! Whether that be from living like a normal human or by taking chances...
     "Get busy living, or get busy dying."

     On a side note, I had a Snickers today... it was the first food post-BMT that tasted 100% as good as I remember it! Woohoo!

[12-01-08] Stanford Appointment

2008-12-01T20:52:00.000-08:00

[10:37pm]
     Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
     Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...

     I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
     I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
     She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.

     I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.

     We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
     Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
     Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
     That's it for the appointment!

     On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
     I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
     Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.

     Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...

[11-29-08] Any Aces?

2008-11-29T22:30:00.000-08:00

[10:30pm]
     In two days I will return to Stanford for a follow-up appointment. I will arrive at 1pm, get my labs and x-rays, and wait until 3pm for my clinic appointment. It feels like a "return" of some sort... like I've been on a vacation from all this cancer stuff lately. I don't want to return...

     I've been getting established in my new home... organizing my life and slowly putting the wheels back on the track. I got a new desk today and I totally love it. I've been spending my day casually setting up my computer and getting my equipment on-line. Everything is getting back in order and I don't want anything to get in the way of that. It's nice to be home... it's nice to no longer be a nomad.

     I've been thinking about the purpose of future bone marrow biopsies and CT scans. I almost want to skip all that and assume the cancer is completely cured. Ignorance is bliss and all that. If you think about it, it's a win-win situation: 1> Cancer stays away and I don't have to worry about it, or 2> Cancer returns and shortens my life-span, but I had a carefree existence.
     For treatment to swallow up the last time one has... is a very sad thing.
     Of course, there are also plenty of people out there who have stuck with treatment despite the odds and have beaten the big C.

     It's a gamble: enjoy your remaining time or fight and suffer for the chance of more time.

     Now I know these thoughts should be the furthest from my mind, but to consider ignoring the advice of experienced doctors... it requires one to check the odds and evaluate the deck.

     I know they want to keep giving me bone marrow biopsies to "re-stage" my lymphoma, but I feel that doesn't really make sense if I am only stage I. If it progresses to stage II, then fine... but to go from stage I to the marrow... seems unlikely.
     In other words, I am fine with the doctors assuming that the cancer isn't in the marrow. They can call me Stage I?. For the pleasure of never being subjected to that amount of pain again... I am fine with that.

     Also, they may me to go to Stanford for the radiation part of my treatment. I also don't see the point... why not go to the local oncologist for that? I'm not about to sacrifice my next semester of school just because a doctor is uncomfortable coordinating with an unknown radiation oncologist in Berkeley.
     For that matter, I'm not about to let anything interfere in my next semester, cancer be damned!

[11-27-08] Turkey Day!

2008-11-27T18:10:00.000-08:00

[6:11pm]
     I had beers last night... it was good. My rebelliousness and desire for normalcy has overruled my obedience, caution, and a little bit of my prudence. But that's OK -- cause I had beers last night, and it was good!
     Also, Dan reported that the SF Oncology Group had no problem with a few beers a few days after the end of chemo. So I'm not really being foolish.
     The truth is: I'm aware of my body and it's limitations, blah, blah, blah... I mean, today I went to storage and loaded all of my possessions into a truck... I think that demonstration of stamina and strength means something.

     Anyhow, the big story is that I am HOME! Yup, right now, I am clicking away on my computer as Liz is cooking me a Thanksgiving dinner at our house in Berkeley! How awesome is that?
     Moving in on Thanksgiving Day... what a way to feel at home. I'm happy :)

     Anyhow, I have to prepare the corn now! Happy Turkey Day, everyone!

[11-25-08] Out

2008-11-25T17:15:00.000-08:00

[5:15pm]
     I am out. Instead of 2-3 weeks of living next to the Stanford hospital, I have been released after only a week. Right now, I am typing these words at my sister's house. Tomorrow I gather my belongings and move to Berkeley... to home. I've been a nomad since the beginning of September, and it is quite nice to finally be able to drop anchor.
     Now I can finally start picking up the pieces and get back on track. True, there's probably radiation down the road... but the hard part is over now. What matters is that I'll be able to remain in school while undergoing radiation. Moving forward in life.

     On a completely different subject...

     They say I can take my mask off after ten days... and I think to myself: what if I take it off now? All my other limitations seems to have been based on strict "guidelines" that were later relaxed. Perhaps, through almost a year of these treatments, I have learned the limitations of my own body. Perhaps I am qualified to make my own judgments on the matter.
     The truth is: I am just tired. I am done making exceptions and limiting my life experiences due to this cancer. I need to return to normal.
     And if someone tried to impose one of those limitations... well, maybe I just wont let them. For example, I am supposed to get a bone marrow biopsy 3 months from day 0, then 6 months, then once a year for at least five years. Maybe I just wont permit them. What are they going to do: send me to prison? Plus, once the cancer is in my marrow, aren't I automatically Stage IV? Perhaps it's better not to know if it's in the marrow.
     It's one of the ways I've been changed through all of this: I am perhaps a bit more sefish and defiant. Life is short and I am going to minimize any suffering. If I have a choice, I am going to do things my way!

[11-23-08] Almost Normal

2008-11-23T15:54:00.000-08:00

[4:10pm]
     Blog. Blog, blog blog, blog blog blog blog. Blog? Blog.

     Good news! I get to leave the Stanford area on Tuesday! Apparently, my counts and whatnot are so good that I only need monitoring or whatever for one week instead of two. So I get to see my family and new home in Berkeley quite a lot sooner than anticipated!
     In addition, typically patients that have graduated from the "BMT ward" to "Cancer Clinic" no longer have to wear their masks in most situations. So, I could automatically infer that I will no longer have to wear my mask after Tuesday (which I will).

     More good news! The mouth pain has gotten considerably better and I am capable of prolonged conversation and the careful consumption of solid foods! Unfortunately, most solid foods taste terrible! Chemo has not affected my taste buds in the past, but, at present, it is ridiculous! In addition, my skin is healing and my energy levels are steadily rising. Also, sleep is getting better and my quality of life is improving rapidly.

     In other words, things are great and getting better. It looks like I've officially survived the BMT. Now, the question of radiation...

     Bah, I'll think of that later... As for now, I'm going to watch a bunch of movies with Liz until the new episode of 24 comes out. :P

[11-21-08] Ducks

2008-11-21T13:33:00.000-08:00

[1:33pm]
     I definitely like the recovery phase much more than the treatment phase: getting better each day is far more agreeable than getting worse each day, no matter the initial conditions.
     It feels silly to say something so obvious, but I love feeling better -- I want this to continue more rapidly; I want to facilitate this. I want to run! I want to be in better shape than I was pre-BMT. Accordingly, I've decided to push myself harder and get some exercise. So, I got out today and went for a walk.
     The physical therapist recommended a walk of 20-30 minutes a day, but since I was new to all this, my target time was 20 minutes. I think there's some rules about being around a caregiver at all times while outside the home or something, but I figured that if I made a bee-line from here to the hospital that no one could really complain. I mean, what can they say? "What if you collapsed all by yourself?" Then I'd say, "Yeah, I'd collapse in a hospital -- that'd be real bad."
     The worst part about all this is that I had to put on my stupid HEPA-mask. Let me tell you, there is nothing worse than a runny nose while wearing one of those. Then there's the people looking at you strangely as you pass them... Now, I could lie to everyone and say that I don't care what people think of me, but that's not entirely true. I could say that I defiantly glare at those staring at the man in the mask, but that's not true either. On the other hand, I don't sheepishly avert my eyes either -- I'm certainly not ashamed about all this. The truth is in the middle ground: I don't care what random strangers think of me... as long as I don't notice it. So, my strategy: Look where you'd normally look; act how you'd normally act, but when you get the feeling that you're being stared at and you're about to make eye contact... just defocus your eyes. :P
     There was this kid that was running gleefully in front of his parents. As he approached me, he stopped dead in his tracks. He looked at me, then looked at his parents, then looked at me again. He simply stood there, waiting for his parents, unsure how to proceed in front of this strange person with a strange mask. Some defocusing was helpful there...
     Other than that, I was too distracted by the world around me to even consider people's reactions. I remember seeing a little finch on the side of the sidewalk, and thinking to myself: "I want to be as free as this bird from now on; I'll never be hospitalized again." And I looked at the trees and the plants and the nature and all the good outdoorsy stuff. I felt happy, and I thought to myself, "As much as I don't like the effort and difficulty of getting outside and going for a walk, I'm glad I did. That seems like a lesson I keep learning: life is about the journey, not the destination. I need to hit the textbooks." Then I stopped by the fountain at the main entrance to the hospital and watched the ducks...

     From a distance, it looks like a fountain, but upon closer inspection, you learn that it is really a duck playground. There's the larger fountains shooting water that the ducks like to hide under, and there's the smaller fountains that the ducks like to sip from or clean themselves with, and there's these little islands with plants to conceal the ducks when they feel like hiding from the world.
     Then I saw these two ducks playfighting with each other. They were relentless! Both ducks would bite each other's legs and they would swim in furious circles like a dog chasing its own tail. Then they would break apart, but you could always see this particular pair eyeing each other across the water. One would swim a little closer, and the other would veer away or pretend not to notice. And, suddenly, one of the two will furiously attack the other. This would repeat over and over again.
     And I stood there, just laughing and smiling at the ducks... with my sounds of joy somewhat muffled by the mask, but not prevented in the slightest. I'm going to go see those ducks every day.

[11-20-08] Returning to the real world

2008-11-20T09:29:00.000-08:00

[9:29am]
     Here I am, sitting in the good 'ol ITA (Infusion Treatment Area). It makes me feel like I've come full circle: Cancer Center (Stanford V) -> Hospital (ICE) -> Cancer Center (Pre-BMT) -> Hospital (BMT). But that's really not the case -- it's just the next part of a new phase.

     But I'm fine with that. Well, not entirely. It's really hard not to get overwhelmed by all of this; it takes strength just to get up and do stuff. I'm sure that will change in a week or so, but it's hard to think about the future when you feel the present so much.

     Yesterday, my mom and I got established in our new little apartment. It's a compact place with all the standard necessities that you'd find in a small studio (except that the bedroom has two twin beds).
     It is a wonderful, wonderful thing to walk from one room to another! A bed in one room, and your computer in another -- how profound! There's room to pace! I am not confined! The only problem is that the bathroom has that "hospital smell" that I've learned to despise. They must use the same cleaners or something; I need to get an air freshener.

     Sleep's been really, really difficult. I have this hot/cold problem that I've just started to figure out. The problem starts like this: I am cold, so I move and adjust the blanket to cover me more. After a few seconds, this new adjustment has me way too hot, so I pull the blanket away. Rinse; Repeat.
     I believe this is because I am so pathetically out of shape. If I get up to do anything, I break a sweat and get hot. This is why I spent most of my time in the hospital shirtless -- otherwise I'd keep removing my shirt and putting it back on... a blanket it quicker.
     Anyhow, so my "thermal core" overheats when I do pretty much anything -- including a simple blanket adjustment. This is why I go from cold to hot so quickly.
     So, my new sleep strategy is two-fold: 1>Take Ambien, and 2> Make all blanket adjustments very slowly, and with a minimal amount of effort. It takes practice.
     Perhaps the best strategy is just to exercise more.

[11-19-08] Freedom (Day +16)

2008-11-19T13:32:00.000-08:00

[1:32pm]
     On Monday, I bargained with my doctors to be let out on Wednesday. All I had to do was drink 3 liters of water a day, eat some food, and practice my breathing exercises. On Tuesday evening, after it was evident that I had fulfilled all of my promises, the doctors agreed to discharge me on Wednesday.

     So why did I not shout out with glee? Why did I keep this wonderful news to myself? Because it was something so great, that if it were to be taken from me, my heart would be broken. To never acknowledge this news is to never expect it; if I don't expect it, then its failure to come true will not disappoint.

     In other words, I feared that somehow they would take this promise of freedom away from me... and they almost did.

     Last night, I had a fever of 38.2 for slightly under an hour. They ordered some blood cultured (which take a few days to process) and took some blood samples. At this point, I was sure that I had more time on my tenure at Stanford Hospital -- I was mortified.
     Fortunately, when the doctors approached me this morning they said that I technically did not have a fever! If you have a temperature of 38.3 or above, then you have a fever. If you have a temperature of 38.2 for over an hour, then you have a fever. I just squeaked by!
     After the doctors made me promise to return if the blood cultures showed any positives, or if my fever returned, they promised me that I would get discharged today!

     All that happened about 4 hours ago, but it has not set in until now. I've been spending the day like I've been spending the past few days -- sleeping as much as I possibly can. I have no doubt that I was in a hospital-induced depression.
     Just in the past half hour or so, I have felt that fog start to lift. I look out my window and stare at the auburn trees in the wind and think: "that's freedom." Then I get filled with such a profound mix of emotions that my eyes can't help but get a bit teary. I am not an emotional guy.

     I felt the same way when my mom insisted we go out for a walk. I had spent the entire day sleeping (or tying to sleep) and I think she recognized, for the sake of my spirits, that I needed a change of venue.
     So we left the BMT ward, and she wheel-chaired me around the hospital. At one point, we came across two large doors opening the hospital to the dark outside. She asked me, "Do you want to go outside?"
     I wanted to go out more than anything in the world. "But we can't," I said.
     "Of course we can! Let 'em try to stop me," she announced.
     Out there, in the freezing night air, I felt completely happy. I felt that weird mix of strong emotions that I spoke of previously; the emotions that made me teary eyed. I wanted to never go indoors ever again. Mom asked me if I wanted to go back inside, but I told her that I wanted to wait for a few more minutes. Then the wind got the best of me, and we returned to the BMT ward.

     So here I am again, in my room, watching the gardeners do their work in the garden below. And I think to myself: "That has got to be the most wonderful job in the world." To spend all that time outside... exerting yourself... creating life. It make me want to abandon my engineering discipline for something that would keep me outdoors -- forget the difference in salary. It reminds me of the movie "Office Space," where the protagonist leaves his job in a cubicle and ultimately finds happiness in construction.

     Still, I'm sitting here thinking about my feelings... and I think I may have been expressing only half of the story. It's not that I love the outdoors, it's that I hate being trapped indoors. It's not that I love my freedom, it's that I hate losing it.
     Now, I'm not an idiot -- I very well recognize that this little hospital stay may have just saved my life. But that doesn't change the fact that, somehow, I have been wronged... and maybe I'm just shooting the messenger, but I can't help how I feel: I hate this hospital.
     Please don't think me unappreciative, but, as I said, all this dehumanizes us cancer patients. We're not at a hospital -- we're at a veterinary clinic. Now, do you think those cats and dogs appreciate their shots and rectal examinations? I bet you they hate the vet too.

     See why I can't wait to get out?

[11-18-08] The Morality of Suffering (Day +15)

2008-11-18T17:12:00.000-08:00

[Counts]
WBC:10.3
HCT:31.8
PLT:58,000

The counts section ends here, as I'm pretty sure they'll all be good from now on.

[4:09pm]
     My mom just said, "Well, this part is almost over." She said, "... this part is almost over." This nightmarish journey has an end in sight: a different nightmarish journey.
     Ok, maybe I'm being a bit melodramatic -- the BMT hospitalization part is by far the most difficult. But I've been focusing so much on that aspect that I am so ready for it all to be done! Now I have to face the post-BMT Stanford infusion period, then the radiation period (hopefully in Berkeley area), then the life-long routine cancer testing phase (perhaps the most daunting of them all).

     It seems that the most pernicious aspect of cancer is the fact that it is not finite. Diabetes may be a life-threatening life-long disease, but everything will work out fine if it's treatment is seriously followed. With cancer, on the other hand, one has to be subjected to harsh treatments with unknown outcomes...all you can do is suffer through it and pray to whatever you find holy. Even if the outcome is favorable, and the cancer is cured, it can always come back -- it's ghost is always there to haunt you. Which would you prefer? A pill to take to keep your cancer permanently in remission? Or a chemotherapeutic agent to attempt to destroy the cancer, but can cause severe long term side effects, unhinge your life, and, of course, can return at any time. That's what I mean by not finite: there is no end.
     Taken to the other extreme, if one were to have a bullet shot through their head, then that would be it: a finite death. And that is, without question, what all cancer warriors are fighting against. But is a bullet through the head more pernicious than a few years fighting a losing battle against a cancer that has you so battle-worn that you are stripped of all identity and converted into this wounded animal? A wounded animal that no longer has the energy for witty banter with the nurses; A wounded animal that does nothing but poop, vomit, eat (if through a tube), and drink (again, if through a tube)... and all that is of concern to those around the animal is it's input(what comes in) and output (what goes out). Seems that the bullet has a greater respect for life with a smaller amount of suffering.

     So, this part is almost over. They have transferred me into a double room, which is a good sign for those looking to get out of here -- it means your counts are good enough that severe precautions are not necessary.
     As luck would have it, they transferred me into a room with a guy who was having his transplant today! I was glad for the guy, until I encountered that overwhelming stem-cell stench... the stench of poorly fried shellfish that had been left out in the sun for a few days.
     The funny part is that everyone was fine with it, except for me -- I nearly vomited 7 or 8 times. I requested some Ativan and air freshener. When they arrived, I was spraying air freshner into my face as I was getting the Ativan -- it worked, for a time.
     Fortunately, the smell goes away with time. Plus, my roommate just got discharged (a day after transplant! Why is mine so long?), so my mom and I stole his window seat. It's much nicer here.

     Truthfully, I'm getting a little depressed in this hospital. I've just been here too long; been caged up to an IV for too long -- I want my freedom; I want to go home. Been trying to sleep away the days, but that never works. All you can do is make sure you eat enough, drink enough (3L), and do their little breathing exercise thingy enough to get discharged. They say that there's a chance I'll get discharged on Wednesday, but I don't really believe that... so, it looks like Thursday. Two whole days from now.

[11-17-08] Sweet Sweetness! (Day +14)

2008-11-17T12:33:00.000-08:00

[Counts]
WBC:20.2
HCT:30.6
PLT:46,000

[12:34pm]
     Everything has changed in an instant. In my last angsty posting, Barbara posted a comment recommending that I try a local mouth pain-relief product, such as Oraljel, to combat my persistent mouth pain. At the time, I was communicating with Liz through the computer, or a series of grunts and awkward hand gestures -- it was the best I could do.
     She saw Barbara's comment and immediately offered to drive to the nearest Walgreens to acquire said product. When she returned I applied the product and found instant relief. For the first time in what felt like forever, I was actually talking! Liz and I spend the next few hours talking about stuff -- it was a beautiful thing.

     Naturally, everything changed after that. I no longer need any pain medication (Fentanyl) and I can actually eat my meals! That is the two major things keeping me in the Hospital; now it could be as little as 48 hours before I am discharged.
     The downside is that, to leave the hospital, one needs to be better. If one is better, they no longer need a single room. So, they moved me to a double with a caregiver that, within minutes, was preventing my mom and I from watching a much anticipated episode of House. Sure, I get wanting to sleep -- 0but it's the middle of the day, when else can I watch some T.V.? With nothing much to do and a lack of sleep haunting me from last night, I decided to get some blissful sleep as well. I was forced awake with loud talking.
     But I wasn't upset; this is what happens in double rooms in hospitals. Just don't force double standards on the patients around you.
     Perhaps I'm being unreasonable, but I thought our volume level was minimal... and I was really looking forward to watching that episode. Plus, when can we watch it now? Don't they now have precedence to request that we not watch it at any time?
     Ok, excuse the rant.

     In conclusion, things are going well. I'm going to try to eat well and whatnot to get out of here soon!

[11-16-08] Sad Times (Day + 13)

2008-11-16T17:26:00.000-08:00

[Counts]
WBC: 27.9
HCT: 26.1
Platelets: 36,000

[5:28pm]
     Too much complaining; don't read.

     I'm in a foul mood. Well, more accurately, I've been in a foul mood... for what seems like days now.
     Right now, I'm playing Runebound with Liz -- so I'm definitely happy. (She's in the lead at the moment, but we shall see...)

     Anyhow, back to negative vibes...grrrrrr.

     So, there's just been too many minor annoyances, too consistently, and for too long now. So now I have to sleep with oxygen on? Ok, no prob. So now I have to be plugged into an O2 meter at all times -- yet another thing to be unplugged when you go to the bathroom. Ok... So now I have to have my PICC line removed because you think it might be the thing causing my low fevers? Argh! Now I have to go back to IV?!?!? After all this effort getting 4 different lines installed? Plus, my veins are all in hiding now -- how are they going to find them? Poke and play?
     Then, of course, there's the myriad of side effects from the BMT. But you've heard all about those... except, I'm just about to go crazy because of this mouth pain! It's terrible! My global mouth pain is pretty much gone -- which is nice, but it didn't account for more than 10% of my mouth pain. I got this thing to the base of the left side of the tongue. It is PROFOUND how much pain can be registered in such a small space.
     So, I can't talk more than a few words at a time, and always at a cost of pain...

     I want to TALK! It's extremely frustrating to be around the people you love the most in the world and feeling like you can't have fun/be fun around them because you have to optimize your words to a caveman level. I like to employ wit and scarcasm -- I can't do that if the pain is too rough!
     Then there's sleep. I need sleep! The nurses waking you up every 30 minutes is fine; the alarms on the IV pole every 60 minutes is a bit rough (because the nurses take 10-30minutes to get there); the alarms on the O2 meter every time you need to go to the bathroom is doable... but being extremely tired, falling to blissful slumber and waking up in under 5 minutes EVERY TIME to
mouth pain is enough to drive one mad.

     I also want to EAT! I haven't eaten in forever! I want a bacon double cheeseburger, and, unlike most patients here, actually relish the thought of eating it. If I didn't have the pain, I'd eat it now!

     All this... is enough to make one depressed and quite frustrated.

[11-15-08] Mom's Update (Day +12)

2008-11-15T16:04:00.000-08:00

4:20pm

WBC 17.4
HCT 27.6
PLT 27,000
Still running fevers

When Austin tries to sleep, he wakes up with mouth pain every 2 or 3 minutes. Austin is feeling "crummy" today. Austin had lesions on his head. He has infected follicles which itch like crazy. His upper back looks a very angry red where he has scratched. He also has a number of lesions on his back.

When changing his dressing, anything that sticks to his skin has torn his skin when it was removed. Now the nurses are putting gauze wrap under anything that needs to be wrapped up (i.e. his PICC line). The PICC line drives everyone crazy because there are so many lines that get tangled up... causing occlusions. Austin has figured that the least occlusions occur when the lines go over his shoulder and down his back and then a shirt over that.

The doctors made an non-scheduled afternoon visit. Without saying they made a mistake, they said that taking him off such a continuous high dose of Fentanyl could be dangerous to Austin. Also, they thought he was needing the "on-demand" dose too frequently. The result? They have changed his medications. His continuous has been added back. They talked about reducing the "on-demand" dosage, but have not done so.

Austin can leave his room and walk the floor, go in the conference room and play a game(you guessed it, he beat me again). We no longer have to wear gowns and gloves, only the mask.

Today, Austin is focused on looking forward to Liz's visit. He is trying to rest a lot. I am watching him trying to sleep right now and notice that his body is twitching a lot.

[11-14-08] Tired (Day +11)

2008-11-14T21:34:00.000-08:00

[Early Count Update]
     Here's my counts:
       WBC: 17.4 (6.9 yesterday) -- Woot!
       Hematocrit: 27.6 (28.6 yesterday) -- Transfusion likely tonight.
       Hemoglobin:9.7
       Platelets: 27,000 (20,000 yesterday)

[4:07pm]
     I've been really tired (sleepy-type) today. This was great for the morning because I was able to sleep-in a ridiculous amount (I've been having lots of trouble sleeping lately...)

     *bzzt* Sorry! I can't write anymore, I feel too crummy and tired. So, I've asked my mom to do any updates.

[11-14-08] The System is Down (Day +11)

2008-11-14T18:32:00.000-08:00

[6:32pm]
     Here's my counts:
       WBC: 6.9 (1.3 yesterday)
       Hematocrit: 28.6 (29.0 yesterday)
       Platelets: 20,000 (16,000 yesterday)

     This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo

     Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
     In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.

     What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.

     In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.

     So, here is a bit of news for the day:
       Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!

       Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.

       I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
  1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
  2:Able to eat! (Again, mouth gets better)
  3:No Fever

That is all.

[11-13-08] Mom says "Different day, more of the same"

2008-11-13T18:35:00.000-08:00

WBC 1.3
HCT 290
PLT 11,000

Temperature: Has been up to 101.6 on Austin's thermometer. Doctors don't seem stressed about the fever. They think it could be white cells fighting an infection.

Today is mostly a repeat of yesterday. Austin's mouth is still very painful. He has two especially bad sores under his tongue. The Fentanyl has been increased (50Mcg to 75Mcg) on as needed basis but Austin tries not to push the clicker so he can stay alert. The increase in Fentanyl HAS affected his concentration. A few hours ago he was standing with a vacant expression on his face, body swaying; I called his name and he jerked to attention. He says he was daydreaming, I think he zoned out! I need to play him a board game tonight so maybe I can win for the first time!! As I read this to Austin he says again "I really was dreaming".

What I find strangest is that Austin will lay down for a nap and wake up thinking it has been 30 minutes later - most of the time it is about 1 minute! He does that all day long. When he wakes up, he feels rested.

The other strange thing is that his body jerks him awake often. His oxygen monitor often goes off for too little oxygen, so that Austin now makes it a habit to put on the oxygen tube before laying down.

We are attempting to watch the movie "BRAZIL". We are often interrupted by nurses, machines going off, bathroom needs etc.

Indicators of Austin's pain level:
   1. Austin talks very slow trying not to move his lips or tongue
   2. It is worse when Austin starts typing on the computer screen         to communicate.
   Signs it is worse:
      Austin will hold his hand to his mouth, palm in, BUT when the pain really gets bad, he will hold the back of his hand to his mouth and his hand shakes---then he looks for his clicker!
      When Austin stops obsessively rinsing with saline water....then even that hurts too much. Austin has mentioned that the saline is not as effective as before. Previously, Austin would rinse with the saline and could talk for a few sentences - now it is maybe a few words if we are lucky.

[11-12-08] Silence (Day +9)

2008-11-12T23:28:00.000-08:00

[11:28pm]
     Here's my counts:
       WBC: 0.2 (0.2 yesterday)
       Hematocrit: 28.6 (26.5 yesterday)
       Platelets: 12,000 (18,000 yesterday)

     Have you ever wondered what it would be like if you couldn't talk? Say you got in a horrific motorcycle accident that damaged only the speech centers of your brain... or an accident so bad that they had to permanently fuse your jaw shut.
     I always imagined that I'd get along just fine. I'd carry a chalkboard around and communicate through written word.
     10 years later, my elementary school daydream has turned into a reality...

     Due to severe mouth pain, I can't speak right now... Not one bit.

     "Testing... testing... this is a test."
     Ok, I just tried talking. The other three previous attempts failed and were quite painful. But I can do it now!

     It was the pain meds. Once my mouth started hurting, I began clicking. Not religiously (exacty every 10 minutes), but often enough.
     I managed about 4 clicks before the nurse came in and inquired about my pain level. I write on my computer: "6: 7 when talking and when silent."

     She had to take off (for another patient, I believe), but in a few moments she was back and we discussed our options with me talking on the computer.
     She wanted to talk to the doctor, to get some part of my pain meds increased... I agreed... provided that I have at least a chance to try to get relief.
     My strategy was to click as often as the pain machine would let you (10mins). It was my belief that after 30 minutes or so of doing this, that I could begin speaking again.

     My experiment failed. She checked in on me, and I still couldn't speak. So, she ran off to contact the doctor. Meanwhile, I continued to type this entry and click every ten minutes.

     Eventually, I had so much pain relief that I was able to speak some words. Still couldn't speak most words, and definitely not a sentence. Still, I had decided to quit clicking for a while because I realized that I had had A LOT! Plus, the pain was a bit more manageable.

     Then the nurse had returned: The doctor approved upping my on-demand dose from 50mcg to 75mcg. I had specifically requested an increase in the on-demand dose instead of the continual dose. A continual dose is administered non-stop, whether you are feeling lots of pain or no pain at all... since my pain levels fluctuate, a continual dose is rather inconvenient. The tradeoff with Fentanyl is pain and mental acuity vs. no pain and less mental acuity. It would be lame to reduce one's acuity during a time when they were experiencing no pain.
     Anyhow, I digress... Even though I can't speak now, the problem seems to have be resolved: pain relief for those nasty situations will be possible much quicker. This time, it took 130 minutes for satisfactory pain relief. With the increased on-demand rate, I should receive comparable pain relief (perhaps greater, because it is quicker) in about 86 minutes.

-------

     Writing this post has been absurdly difficult. Remember what I said about mental acuity? Well, I've had quite a bit of Fentanyl, and my concentration is positively pathetic. I start to daydream mid-sentences, sometimes to such an extent that, instead of the subject-at-hand, I start to type about the dream instead of the blog. Sometimes I just drift off while typing a sentence: "something like thhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh"

     In fact, that's why I was especially motivated to finish this little post -- my mind is challenging me!
     Also, I'm sure my writing has been unclear and generally awful for this post. So I'm trying extra hard for it to make sense (Additional Challenge)! I'll find out tomorrow just how bad my writing is on large doses of Fentanyl.

Whew, I'm done. That took 2 hours and 10 minutes to write!

[11-11-08] Mourn the Eyebrows (Day +8)

2008-11-11T10:08:00.000-08:00

[Counts]
     Here's my counts:
       WBC: 0.2 (0.1 yesterday)
       Hematocrit: 26.5 (29.2 yesterday): 2 Units Blood Later
       Platelets: 9,000 (18,000 yesterday): Platelet Transfusion Later
       Hemoglobin: 9.2 (10.5 yesterday)

[4:17pm]
     Yesterday, to my delight, I had discovered that my hair was falling out again. I was delighted, of course, because it triggered the whole "chemo is working because..." emotion. It wasn't a slow loss, either -- the tiny blond hairs that had started to grow back were coming out in clumps. Following tradition, I proceeded to shave with my fingers (pinching).
     Today, I was shocked to discover that I had no eyebrows. I don't know why I wasn't prepared for this: I recognized that the eyebrows were thinning, but I didn't think they'd all disappear entirely overnight! Oh well, they are gone.
     I always said that I would have the most difficulty losing the eyebrow hair. This is mainly because it is an unavoidable cancer giveaway. Having a bald head can simply be a fashion statement; no one intentionally shaves their eyebrows.
     So, now, I can't simply pretend that I don't have cancer when I'm out in public. It's funny though... now that I've been through so many painful, embarassing, or humiliating situations... I could really care less about not having any eyebrows.

Barbara just arrived, so I'm gonna hang out instead of ranting further!

P.S. I just realized -- no eyebrows indicated that I went through cancer treatment... As of now, there's a good chance I no longer have cancer. That's a good thought.

[11-10-08] Totally Acclimated (Day +7)

2008-11-10T10:48:00.000-08:00

[10:52am]
     Here's my counts:
       WBC: 0.1 (0.1 yesterday)
       Hematocrit: 29.2 (29.5 yesterday)
       Platelets: 18,000 (32,000 yesterday)
       Hemoglobin: 10.5 (10.5 yesterday)

     So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
     Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)

***

     It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
     Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.

     I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.

[11-09-08] Fentanyl Conspiracy (Day +6)

2008-11-09T08:37:00.000-08:00

[8:37am]
     It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
     So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.

For example:
     They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
       1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
       2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).

     But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
       1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
       2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
       3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
       4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.

     So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
     I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
     In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
     Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!

-----------------------------

     Enough of my rant. I just finished typing it when my two doctors showed up...
     Doctor: "So how has your pain management been doing?"
     Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
     (Both Doctors) "No, no, no, no, no."
     (First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
     Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
     Doctor: "If you have pain; take the Fentanyl."

     Then they went on to discuss other parts of my health.

     So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
     As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.

     On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
     I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.

[11-08-08] Long Night + Fentanyl (Day +5)

2008-11-08T08:47:00.000-08:00

[8:48am]
     Last night was a looooong night. Not a hard night; a long night.
     We had several objectives:
       1: IVIG (Norwalk Treatment) - Represents about 4 hours of the nurse coming in and out.
       2: Bag of Platelets (Due to some rectal bleeding I discovered on Fri.) - Represents about an hour of nurse coming in and out of room.
       3: Two units of blood transfused (Hematocrit is at 26 -- bah, I could go way lower, but I guess it's better to be safe than sorry). Plus, those bags are liquid energy -- like the stimpacks from video games - "Let's get some!" Two bags represents 6 to 8 hours of the nurse coming in and out of the room.
       4: All the usual stuff -- Antibiotics, hydration, etc...

     Calculate the fact that the PICC line has only two lumens, and you have a long evening indeed -- We just finished a couple of ours ago.

     So where does Fentanyl come into play? Where doesn't it! Well, I would fall asleep, the nurse would wake me up and ask me my current pain -- I'd usually say something like 4 or 5 (because the psin is usually high upon awakening). Then, I'd click the Fentanyl clicker. This would, in turn, lower my respiration and make me feel a heckova lot better.
     But the respiration going lower wasn't a good thing if I was to be going to sleep -- ya gotta keep breathing in those dreams of yours!
     Accordingly, they put be on oxygen durning the night.
Despite the respiration, I was in pain, so I continued to click away. Maybe I'm worse at night because there is no mental acuity/pain tradeoff when I am asleep...

     Anyhow, I got a little Fentanyl lecture. Not a stern one, just a "Hey, don't be reckless with this stuff -- it's dangerous" lecture. In a way, it was quite disappointing, because I like this nurse and I most certainly do not use Fentanyl recreationally - I may joke about it, but it is really all about pain relief.

     I recall a nurse answering a question from my mom on the suject of chemical dependency... The nurse replied, "As long you as take the drug as prescribed: to relieve pain, anxiety, or whatever it is indicated for. there is zero percent chance of addiction.

     You may be able to tell my writing is being influenced by Fentanyl at present, but should that prevent me from taking more if I am in pain?

No Way!

P.S. - I finished assembling my metal praying mantis that Barbara got for me -- it's awesome!

[9:54am]
     I just had to be instructed in general ass care and proper application of lotions. This is because of the previously mentioned problem in the rear. *sigh* How embarassing.

[11-07-08] Things are Great (Day +4)

2008-11-07T19:18:00.000-08:00

[7:19am]
     Let's see... time for yet another update on my general well-being and state of mind.

     Physically, the mucositis has deteriorated to epic levels. I tried to take a ship of chilled milk this morning, but it literally scalded my mouth. Just out of curiosity, I pondered to myself how could something that is chilled taste like simmering water. Then, I proceeded to mouth the words "hot, hot, hot" as I'm fanning my mouth with my palm -- sign language for "I just ate a whole heap of Jalapeno Peppers," I'm sure.
     But even without food/beverage, just repositioning my mouth alone can cause quite severe pain. Talking is very, very difficult. And, as Barbara has said, I've learned that certain words be only said through clenched teeth, for safety purposes.
     Still, Fentanyl is my friend. And as Dan said in his previous email: "Hang in there bro...click......click....click...clickclickclick."
I couldn't agree more

     However, there's the painful mental acuity vs. stupid and painfree tradeoff. To those used to my writing, it may be painfully obvious that I've been clicking the pain away. I keep nearly dozing off mid-sentence, so this may be an entry best kept short.

     Then there's the myriad of skin problems. Now, just the phrase "skin problems" sounds like it can be treated with little more than daily moisturer and some SPF 10.
So let me rephrase that: "There's the myriad of skin/host rebellions with a scattered collection of skin terrorist splinter cells."
     That's better. My chest looks like it's been subjected to an Iron Maiden with a sort of chicken pox.
     But, I believe I went into a little detail yesterday, so I'll spare ye. Lets just say I've been vigilant!

     Anyhow, nausea is at a low because I'm not eating much! Woohoo! Err, I take that back, completely. I was about to take pills while entering a blog entry, but nearly threw up. So, nausea's not completely gone. But I'm getting tired, so I'll just summarize like this: My symptoms are getting worse. My management of those symptoms has gone through the roof on both an emotional and a chemical level. In short: Things are great!

my Things are going smashingly well!

[11-06-08] Day Three (Day +3)

2008-11-06T18:12:00.000-08:00

[6:13pm]
     Day 3 has come and gone for me, and despite my previous assertions, I believe that I was incorrect when I said that "Day 3" will be the most severe. From what nurses and doctors say alike, the worst days are those just before the time of "white blood cell recovery" - when your white blood cells begin to reproduce themselves normally.
     Still, with all my personal hype built up, I have somewhat come to believe that day +3 is a milestone of sorts. So, in the name of journalistic integrity and whatnot, I am here to complain, yet again, about a new set of "experiences."

     This morning started out like any other: with a shower. However, in order to shower-protect my newfound PIC catheter, I needed to figure out how to use their associated shower contraption. Not too tough -- imagine waterproof sleeves with belt strength cuffs at both ends. My arm was nice and warm.

     In addition, I had to unplug myself from new and (EXTREMELY LOUD) health monitor. This is because they have me doped up on self-administered Fentanyl -- it makes sense, really, you don't want to give autreally bored individual an essentially limitless supply of Heroin without any precautions, do you?
     So, that health monitor is yet one more thing that I have to worry about... plus the fact that the sensor is placed on my middle finger makes typing quite difficult.

     After the shower is typically lunchtime: where someone walks into the room with some food. I like to see their expressions when I say, "Nah, I'm not eating food anymore. No thanks." They realy want to leave you the food -- as if their jobs depended on it. Oh well.
     Not having to eat at all is quite liberating, in fact. Keeping certain foods down is a tremendous chore. Plus, often the food you can keep down tastes horrible or something. Then you puke it all up anyways, so all that effort was moot.
     So, just skip the middleman and avoid eating entirely... say, until when your white counts start to recover.
     As for the pills... yes, having some food in the stomach is necessary for digestion of certain pills.
   I'd say: 1> Consider not taking said pill -- is it really important? or...
   I'd say: 2> Ask from some Ativan before you take your pills -- it helps!

     The other things I sped my time doing (religiously) is mouth care and skin care. I do my following skincare/mouthcare regimens every time I get up for the bathroom.
*** MOUTHCARE ***
1> Rince with saline solution and spit out. Sounds simple enough.
*** SKINCARE ***
1> Apply general moisturizer to dry areas on chest and back
2> Apply special anti-itch moisturizer to itchy areas on chest and back, armpits, and groin area.
3> Apply super-special cream to areas of skin with a rash due to repetitive motion of areas (arm pits, thighs, groins, etc...)
4> Apply ultra-special powder.

     As much as I would hate to do so, #4 requires further elaboration if I am to be called a reporter of the facts. You could also label is as TMI;DR (Too much information; Don't Read).
     Anyhow, VP-16 is VERY toxic for the skin. I mean, right now, my chest looks like it's been put through a blender. Huge purple streaks are visible, rashes, and spots of red dots (folliculitis) show up everywhere.
     In addition, in areas with high friction, such as groin, or armpit, skin tissue has been known to slough off in chunks.
     Let's just say that I'm fighting to prevent that from happening, it can be quite difficult, and that is where powder #4 comes into play.
     I can see many making the following joke, so I'll just beat ya to it: For the sake....of...my skin...I must...powder my balls.

     Lastly, I'd just like to say a few words about patient-controlled analgesic. They switched me from Dilaudid to Fentanyl which effective halt the pain related nausea! Awesome! No more choosing between having pain or being sick. That is all. Take care outside world.

[11-05-08] Day Three is Coming (Day 2)

2008-11-05T14:41:00.000-08:00

[2:41pm]
     Today, I wanted to tackle the world head on! I woke up early, took a shower, did all my skincare/mouthcare, and dressed up in my street clothes. Then I sat on my newly installed exercise bike, turned on the TV, and got ready to do some exercising!
     ***OCCLUSION IN LINE***

     That is my metaphor for the day. The darn pumps beeping. They beep continuously and relentlessly until a nurse (not you) fixes them. Air-in-line, transfusion complete, occlusion in line errors are enough to take any sane man to oblivion.

     Unfortunately (or fortunately), I'm too tired to rant any further... I got some sort of weird virus in the hospital, but my mom will tell you all about that.

     PS -- Everything I've read seems to indicate that day +3 is the hardest. So, one more day!

MOM'S UPDATE 3:05pm

This morning when I arrived a nurse was putting in a PIC line in Austin's left arm. She had some difficulty due to scar tissue. Normally, the PIC line hangs down but for some reason, Austin's line goes up and the line keeps having problems. The nurse comes in and fixes it...."beep, beep, beep" again. Austin is VERY tired and just wants to get some rest but either the beeping is going off giving him a headache or someone is coming into the room.

Austin's nurse recently came into the room to give us some "bad news". Both Austin and I thought that she was going to say that something is wrong with the PIC line and it would have to be redone. Wrong, Austin has a virus called "Norwalk". This is known as the "cruise ship virus". No one can account for how he got this virus, but NOW everyone haws to wear gowns, masks and even gloves if they are going to touch the patient. It is highly contagious and the main symptom is diarrhea. Another patient on the ward tested positive for it, but apparently now he is negative.

Anyway, Austin will be given IVIG, which is collected from a group of healthy donors and has the antibodies to fight this virus. I caught the doctor in the doctor's area and asked a few questions and he will be visiting Austin to explain in more detail and also to pull the central line from Austin's neck.

Austin's vitals are fine. His mouth hurts so much it is hard for him to talk. He was able to keep some ensure down and will get IV nutrients starting tonight.

[11-04-08] A Challenge! (Day +1)

2008-11-04T08:15:00.000-08:00

[8:17am]
     I feel that I have now familiarized with my arsenal: anti-emetics, Dilaudid, creams/ointments, mouthwash, applesauce, etc... I am ready for the challenge!

     At first, of course, I felt quite helpless. I mean, I was limited to the drugs the doctors provide, the schedule of the nurses, and how my body reacts to the chemo... But now, I'm establishing a sort of routine. Each time I head to the bathroom, I apply various lotions and use the mouthwash. Each time my mouth hurts especially, or my stomach feels upset, I can click away on the clicker! Control! It is a good thing.

     I suppose it's a time tested strategy for me: When the going gets tough, establish a routine. :P

     Bah, I just vomited. All that effort getting my rice crispies soggy so that I could eat them... Oh well, I'll just eat more or something. It's routine -- what can ya do?

     Funny... I can't talk right anymore :P I have to speak real slow -- like I'm drunk even.

[3:24pm]
     They upped my Dilaudid because the mucositis got so severe. In the blink of an afternoon, I can't eay anything -- it just isn't possible. Even Jello is too abrasive! Popsicles: Your tongue has to scrape the ice off.
     So, right now, I'm on a diet consisting entirely of Gatorade and water. Hmm, now is a perfect time to demonstrate the health benefits of non-alcoholic beer. A friend of mine's father, who is head of the pathology dept. at some big place, once told me that non-alcoholic beer is better for you than gatorade. The beer has starches, sugars, protein, and whatnot. So, they should prescribe me some non-alcoholic beer! My life may depend on it! :P

     Seriously, though... they'll probably give me liquid nutrients or something... eck. I need to keep my stomach processing stuff!

     Please excuse the fact that my posts may be a little less, uh, cerebral, than usual. :P

[11-03-08] Happy Re-Birthday to Me (Day 0)

2008-11-03T17:46:00.000-08:00

[5:46pm]
     Actually, the stem cells were the least of my concerns today. After discovering just how much happier and pain-free I could exist with Dilaudid, I became just a little upset when I had to wait an hour for some morning relief. Apparently, you're out of luck if you request any medication between 7:00am and 9:00am.
     So, in my discomfort, I sat there waiting for the nurse to administer the medication. It seems I do that a lot these days. And, well, today I had a nurse that was particularly slow. After a while, I got my medication, and was set up for a patient-controlled "clicker" device. Of course, we were told that this would take place before lunch, then before one thirty. Meanwhile, my initial dose had worn out hours ago and I'm feeling crummy. But, of course, I couldn't do anything about it because the "clicker" was on it's way. So more waiting.
     Then I vomit due to nausea... 30 minutes for Ativan (with mom bugging them twice). Yes, I'm complaining, but it has been a ridiculous day for me. People are suffering here!

     Don't get me wrong, there are plenty of very fast and dedicated nurses here. Plenty is not 100%, though. So every now and then, I guess ya get the short end of the stick.

     But my point here isn't to attack anyone, just to vent a little frustration and explain why my Re-Birthday has been somewhat more anti-climactic than expected. But now that the shifts are a-changing, I'm starting to feel a little more comfortable. My Dilaudid pump is working fine and keeping my stomach from eating itself. So all I really have to worry about it my skin (I am quite spotted!), eating food, and managing nausea.
     All in all, with the Dilaudid in the picture and a little effort, I can have a fine day. So sweet.

     We also moved into an isolation, i mean, single room. So there's a lot more space and it's kinda nice! My mom tells me I need to stay neutropenic! :P
     Still, though, I can't leave the room. Makes have a little cabin fever, ya know? I hope I'll make it through that alright.
     Oh, and can you believe it? Liz and I were casually talking when a maintenance guy storms in and says: "Ok, we're moving you now." I have so much stuff with me! The xbox, the computer, clothes, games, etc, etc, etc... IT was a very frantic few minutes, indeed. But we got it done. Kinda silly being a neutropenic BMT patient with a mask and scrambling like he's trying to loot an xbox 360.

     Thanks for the birthday wishes, everyone!

[11-02-08] Queasy Buddha (Day -1)

2008-11-02T19:16:00.000-08:00

[7:17pm]
     I originally wasn't going to post today -- the world was just too bleak. My stomach pain/queasiness/discomfort/whatever was distressing every aspect of my life -- not like you need to vomit, but that you're just sick in the stomach.
     I spent basically the entire day trying to combat it. Chugging Maalox, repeatedly going to the bathroom, sleeping, lying still, concentrating... anything! Eventually, I game to realize that the only practical strategy was unconsciousness.
     So, when poor Liz came to visit me, I wasn't very good company. I pretty much slept most of the time. But what else could I do?
     What's worse is that I began to get depressed about this. 3 more weeks of this sort of stomach sickness was an unbearable thought -- but what could be done?

     Enter the brilliant doctors and their brilliant drugs.

     It turns out, that my GI tract is all messed up due to the chemo. So, it's not your normal "flu" like symptoms that is causing my queasiness. The doctors prescribed a gnarly painkiller called Dilaudid, and it works great! All of a sudden, I feel like my life has returned to me! I can concentrate enough to type in my blog, or watch a bit of TV, or play some video games -- it's wonderful!
     I'm staying on this stuff. And it's not recreational or anything like that, I'm just happy to not be suffering. It's Buddhist philosophy: "Without suffering, there is no happiness." [Edit: Apparently I'm completely wrong here, so, instead just consider the quote my personal philosophy] Well, my absence of suffering is making me damn happy right now.

[11-02-08] 5:45pm Mom's update

2008-11-02T17:26:00.000-08:00

Today has been sometimes crazy and sometimes really quiet. When I first arrived, the first thing I see is someone in the room without a mask. I saw red! I asked to speak to the resource nurse (the nurse in charge of the floor). I told her everything that happened yesterday and said that if a procedure is set in place, then it should be the same procedure for everyone. We talked for quite some time. She was in total agreement with me about everyone wearing masks when they enter this room and promised she would talk to all the staff today and tell tomorrow's resource nurse about our conversation...AND have that resource nurse come talk with me. We talked about the fact that I (or any other family members or caregivers) did not need this added stress.

I also explained that my concerns were not only for Austin, but also for the other patients. I was not given any instructions about how to wear my gown or mask, and didn't find out that there were special sinks there to wash my hands every time I come onto the ward. Basically, it is like the 3 minute scrub with a brush but without the brush. You press the pump for the special liquid into one hand and with the nails on the other hand scratch into the palm of the first hand - which works the liquid under the fingernails, then do the same with the other hand. I noticed that many people who come onto the ward don't do that. One man who entered when I entered just put on a mask and gown and never washed his hands in any way in the ward!

She also said that she had planned to move Austin into a private room on Tuesday but she would try to get him one today or tomorrow if possible. Austin's roommate was supposed to be moved out to another floor (he is not a BMT patient but the floor he should be on ran out of beds) and the resource nurse said that she would do everything possible to keep the second bed in the room empty. That all happened around 9:00am. About 30 minutes after the resource nurse left, in comes a maintenance man with a ladder and NO MASK! He said that the nurse at the reception desk told him he didn't need a mask if he was only in the room for 1 minute! I left the room behind the man and lo and behold, there was the resource nurse. I told her what the man said and she was very upset and apologetic.

I was ready to hand make a sign to tape on the door (in addition to the red paper that is already on the door saying that a mask and gown must be worn into the room). The resource nurse said she would make a sign - and she did.

It is now 5:45pm and nothing about Austin's room situation (including his roommate) has changed.

As for Austin - how is he doing? Austin enjoyed seeing me on my rants on his behalf. His stomach is queasy but not hurting or nauseous. He is trying to eat but having a hard time. His mouth is sore. Today the doctor's told him that they were sure he would be on IV nutrition soon, as most patients in his situation are. His blood pressure is fine, no fever, headaches or neck pain.

Liz came for a visit from about 1:30-5:30 (Yeah Liz!!). I took that time to run errands. Austin says he slept a large part of that time due to stomach discomfort.

When the doctor's where here this afternoon I asked them why they only take blood at 8pm (and don't get the results until about 10pm). What happens if Austin becomes neutropenic during the next 24 hours? The doctor said that they try to plan ahead based on his stats and get him into a private room.

Doctors just came in and there was a discussion about Austin's stomach problem. Maalox has not helped. I mentioned that Austin downplays his discomfort. The doctor is going to give him morphine and see if that helps. The idea is that the mucositis in his mouth is throughout his gastric system and the morphine should calm that down. Austin said he is feeling giddy at the thought of relief!

[11-01-08] Cytoxan (Day -2)

2008-11-01T04:55:00.000-07:00

[10:55am]
     I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
     Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
     I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.

     I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P

[2:30]
     We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
     I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.

     Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.

     Health Status: Blood Pressure is up, and I have normal temp! Woot!

[10-31-08] A Long Night...

2008-10-31T17:44:00.000-07:00

[5:45pm]
     That was the hardest night of my life.
   The Clock: The clock is my enemy. I am aware that time will help cure this infection, but how much time? Each moment sounds with a resounding tick... time is moving way to slow.
   The FeverMakes it so you cant function, or do anything. Also causes headaches, pain behind the eyes, and persistent neck strain.
   The Neck Pain: The most annoying. Since I have so many hundreds of wires coming out of me, I am pretty much immobilized... I can only lie on my back. When my neck hurts, I'm out of luck!
   The Nausea: For some reason, my nausea came quick and violently. It was actually a nice thing, in a way. Of course, vomiting uncontrollably is no picnic, but the ativan always follows. That gives me a brief respite from neck pain, and a moment of blissful sleep.
   The Shivers: Terrible, unrelenting shivers... All your muscles get tired simultaneously. However, the nurse wouldn't let me cover myself with blankets -- I needed to get cold. So the strategy was to blow a fan on my, get me nice and cold, then dope me up with morphine or demerol so that I wouldn't shiver. It worked pretty well.

     Still, it was a long night.

     Thanks for all your support, but now I'm getting really tired again -- back so sleep!

[10-31-08] Mom's Update

2008-10-31T12:35:00.000-07:00

12;25pm
i was able to see Austin at 10:00 am. He was extremely tired so I left the room so he could sleep.

I just returned from seeing Austin. He commented that it was a rough night. His temperature went up to 105 again and he started the rigors (extreme shaking). He looks very tired still. Austin also was vomiting this morning.

They will be moving him this afternoon. His blood oxygenation was down to 91 without the oxygen assistance, so they are still keeping him on oxygen support. They are taking it off every so often to check how he is doing without it. After eating some applesauce, Austin asked for some ensure (strawberry). Again Austin is really tired and I told him to go to sleep. I have left the room so that I could update his blog.

There is no internet in his room and there are no cell phones allowed on in the ICU.
I know this is not detailed information, but his nurse just left for lunch and I didn't ask for updates on his BP, but his temperature is close to normal - YEAH!

2:00pm update
I just went in to visit Austin. Let me describe the set-up. You enter a very small room, you must open a special packet that contains a fingernail scraper and brush/sponge with iodine/something mix - just like the doctors use on T.V. You need to scrup with that for 3 minutes, either before or after scrubbing, you put on a gown and mask. Then you can go through the next door into the room.

Well, after I arrived, Austin's nurse (yes, he has his OWN nurse who is just taking care him) poked her head out. Austin was gently snoring again. He had stood up to go to the bathroom and vomited, they gave him Adavan and he was resting so it didn't make sense for me to gown up. His blood pressure is fine, temp is fine and he WILL be moved back onto the cancer ward this afternoon!

3:50pm update
bp 91/55 Heart rate 118 oxygen temperature is 38c = 100.4

I am angry....grrrrr. Austin was moved back into the same room he was in before ICU. A room with another patient whose visitors are not required to even wear a mask! They say that Austin's counts are up high enough that I don't have to wear a gown but still need to wear a mask. I was told previously that under no circumstances should I even lift my mask to take a sip of drink; I would need to exit the room to do so. Now they have Austin sharing a room and the visitors are not wearing masks. One nurse told me that the curtain would take care of blocking the germs!!!

Ok, as I type this the head nurse came in and told me that I was rght and the other visitors would also have to wear masks. I am glad I madea fuss. Time to unpack.

5:10pm bp 81/48 there is concern...temp is still 38c = 100.4
they are pushing fluids through IV

5:30 bp 106/81 whew...everyone cheered
Austin is very tired and weak. Ate a little soup but has to take breaks to rest between bites.

[10-30-08] Barbara's Update - ICU

2008-10-30T20:54:00.000-07:00

8:55pm Thursday
It is now 8:55, and Marie and I are waiting in the "Family Waiting Room" next to the ICU, an overcrowded, noisy, unpleasant place with loud conversation (most in Spanish) and unruly children. Austin is in room E260. I was able to speak to him for a moment. He appears calm, and his fever feels lower. The last I heard it reported was about 102. His room has a busy influx of nurses and doctors, so he is getting a lot of attention. At this point, his blood pressure is a matter of concern - it is in the vicinity of 80/40. However, his pulse is described as very strong.

The procedure as far as I know it now:
1. Install an arterial blood pressure monitor. This gives better BP monitoring.
2. Remove the Hickman catheter. This is what they suspect is causing an infection. When they remove it, there are signs they will be able to see easily indicating if an infection is underway. However, if they see nothing, that is not proof there is no infection.
3. Install a new port. This one will be in a vein near an elbow. (uncertain if I heard this correctly.)
4. Administer antibiotics - they have been doing so a couple of days already. Cultures are in progress, and if any are positive that will assist in optimizing the antibiotic.
5. Delay Cytoxan a day. Stay in ICU for at least a day.

We are worried of course. An infection for any patient with a near-zero white cell count is a serious matter. They have not said for certain that they believe this is a bacterial infection instead of a chemo reaction, but it appears that they must at least assume that is the case until proven otherwise.

Updates to be added, hourly if necessary.
------
Update, 11:05pm Thursday
We were able to visit him finally. Status:
1. Hickman catheter is out. They saw no signs of infection on the catheter, but the site seems inflamed, so they feel that is likely the cause.
2. An arterial BP monitor is installed in his left arm. Doing this, they found his central BP to be normal. That shows that the fever was causing his peripheral BP to vary. That is good to know, and is presumably good news.
3. He has a new central port installed in his neck. Wow, that was fast. It is on his right side, and I get the impression that it is somewhat annoying for him.
4. His fever is closer to 101 now, going down slowly. He says he feels tired and wants to get some sleep.

------
Update, 0900am Friday
It is frustrating trying to get through to the ICU by phone. Only on the 5th time did I get connected to the right room and the phone was answered. The nurse handed the phone to Austin. When I asked him how he was doing, he said "Not great." His temperature is 38.3C which is 100.9F. That is considered to be a low fever. He said his temperature went up again, but if it is 100.9 now, it must have fallen again - or I got the wrong temperature from him. It was a very short call. He also reports that he is uncomfortable and has not eaten anything.

---------
Update, 10:20am Friday
Phone call from Marie. She reports that the doctors have seen Austin, and that he is "doing much better" and that he may move back down to his BMT unit later this afternoon.

[10-30-08] Mom's comments

2008-10-30T15:52:00.000-07:00

Austin was feeling sick when I arrived this morning. He tried to drink ensure and it didn't stay down. He has been getting Benyadril and Adavan (sorry if I spell them wrong) to help with the nausea. Around 12:20 they started his chemo. He slept off and on for almost three hours and then started shaking violently. He was freezing. I went and got him two hot blankets, but that didn't help. I asked the nurse to come right away. Soon after it became worse and as I was getting ready to yell for a nurse (my hand was reaching for the handle) - she came in.

The nurse had to check his blood pressure and temperature because they are concerned that his blood pressure has been going too low. Finally two nurses came in with four more hot blankets and IV medications - Demerol and adavin to stop the shakes. One of his doctors just came in and checked up on Austin, then she ordered Compazine (another anti nausea medication) for Austin. He has already had all the Benedryl and Adavan allowable in a certain time frame. Because of all the shaking his temp. is 103.6. To tell the truth, he was shaking so hard (he said he was freezing) I almost climbed into the bed with him and held him!

The medication has worked and the chills and shaking have ceased - Thank God!

On a side note...many of the nurses and aides have admired the chemo quilt that Liz's mom made for Austin. I am happy that I can be one of his support team and although the circumstances are not the best, what an awesome opportunity to spend quality time with my son.

Yesterday Austin told me he was bored and he laughed when I offered to get him his DS or a book. Austin said that it was the first time that I didn't respond with... "Then clean your room" or some other chore. I told him that this is the first time in his life that he has my undivided attention for two months and I am at his beck and call.

I hope Austin will feel better soon so that he can write his perceptions of this event. His chemo today is administered for over a four hour time period and he has about 20 minutes left.

As I finish up now, Austin is asleep again and gently snoring with a few occasional grunts.

Mom - cont. 5:30pm

Austin's temp reached 103.7 and is starting to come down; however, it looks pretty certain that he will be going upstairs to ICU for the night. The possibilities are these: 1. He has some sort of infection/bacteria in his line and they will have to remove it, use veins for IVs for a day or so then put in a PIC line...which is like a port but it enters at the inside bend of the elbow and goes to his chest. They use exray when they place the line. 2. He is just having chemo induced fever or 3. he has some sort of other infection. They did a blood culture last night and again around 3:45 today. It takes 24 hours to get culture results back (they also did one Sunday night).

I will be allowed to stay with him until tonight. It is hard to watch Austin feel so bad. His symptoms are: Fever - which has been pretty continuous since Sunday night but varies in severity, today being the worse. Neck pain - this seems to be a result of the fever but could also be a sign of infection. Headaches - again fever related. Backaches - no comment has been made about that but Austin addressed that in previous posts. Nausea/vomiting, today is really the first time since admittance that there has been actual vomiting (to my knowledge). Fast/heavy breathing, I know that could be caused by pain due to my personal experience. Dry mouth/thirst, no comment. Severe chills/shaking which the nurses call "rigors". Sweating, due to fever. Basically, Austin feels awful.

I asked the nurse and he says that it is obvious that Austin has some sort of infection and that it is pretty certain he will be going to ICU for a day or two. Once they find the source of infection, then can treat it. Meanwhile, they have giving stronger broad spectrum antibiodics, pushing fluids via IV and watching him very closely. In ICU there are more monitoring machines and they can watch him even closer - but the draw back in ICU is the germs that are up there from other patients. I will address that more later when I learn more about it.

to be continued.

6:30pm

BP 113/46 temp 40.6c = +105 degrees adding oxygen to assist breathing

They have taken blood gasses because of Austin's rapid breathing
The move to ICU is almost certain until they can find where the infection is.
The "germ" thing in ICU is during transportation, but Austin will have his HEPA mask on to protect him. He is sleeping - all the meds are sedating him.

6:50 BP 104/40 temp 39.6c (after drinking cold water). Ice packs on neck and head. Oxygen saturation 95 w/assistance - taking off assistance and will recheck in 10 min.
Gave Adavan (which contains some tylanol which also helps with fever). Austin is drinking a lot of water.

6:58pm Oxygen saturation 88 temp 39.0c 102.2 White cell count is down to .4
Back on oxygen support. Austin will be going to ICU. When Austin lays flat his breathing is more labored so it is better for his head and chest to be elevated - but not a huge difference. Central line - tunneled (his port) will be pulled in about 15 minutes. They will put a central line in at ICU, probably in his neck. All labs are consistant with an infection. IV being started at 7:06pm. Austin is now Neutropenic (ok I can't spell). This means he must be in "isolation". I must say I am impresseed. He has had a doctor stay on the ward to monitor him, his nurse stayed past his shift and right now he has 6 nurses and 2 doctors in the room (the ICU team is here).

[10-30-08] VP-16 (Day -4)

2008-10-30T10:50:00.000-07:00

[10:50am]
     I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
     Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
     Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
     The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
     Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
     The nurse recommended I try some ensure, so I'll try that next.

     The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
     The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.

     Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)

[10-29-08] Day of Rest (Day -5)

2008-10-29T10:54:00.000-07:00

[10:54am]
     It's funny how they call non-chemo days: "day of rest" -- every day is a day of rest. You get bags and bags and bags of medicine each and every day, except add a few bags for those chemo days. Oh well, maybe if I were adversely effected by the chemo a bit more I'd have a different idea. I love tempting fate. :P

     I'm still in a double room -- they told me that they'd move me in a single when my counts were too low. Darn it! I really want one of those exercise bikes, but there's no room for one in a double room. And, of course, once my counts are down, would I really be up for a bike ride?
     Hmm... If you can ride the bike, then your counts aren't down and you don't need an isolation room. If your counts are down, then you can get a single room to ride the bike, but you'd be too tired to ride the bike. Almost a catch-22.

     So, here's my schedule until transplant:
     Day -5: Day of Rest
     Day -4: Whopping dose of VP-16
     Day -3: Day of rest
     Day -2: Whopping dose of my dreaded nemesis: Cytoxan! Noooo
     Day -1: Day of Rest
     Day 0: Transplant (followed by 2-3 weeks of recovery)

     The interesting thing is that my roommate seems to be going through (almost) the same regimen (without the Gemcitabine & Navelbine). Today he gets his transplant, and the day after he is discharged! Is he getting lower doses that me? Is his insurance inferior? I know G&N were pretty hardcore, but not enough to justify an extra 2-3 weeks for recovery!
     He does have non-hodgkin's lymphoma -- maybe that's different.

     On another note, I had BACON today! So I must be feeling better. Darn. I want that bike! :P

[10-28-08] BCNU (Day -6)

2008-10-28T10:56:00.000-07:00

[10:57pm]
     Last night I got two blood transfusions, so I have a bit more energy today. Apparently, my hematocrit dropped two points (to 25) in only one day! These drugs are impressive!
     So, using my newfound energy, I set up my x-box, my computer, and various other things, and got situated in my room. They were supposed to move me into a single room, but instead they decided to keep me in here until my white blood cells start to plummet.

     Anyhow, I think my stomach has transcended to a perpetual state of ickiness. Also, I'm starting to get pain in my mouth (right behind my tongue) whenever I talk. Soon I may not be able to talk, or take my pills. I mean, the purpose of the psychiatric consult was to determine which pills I will be able to take in liquid form, and substitutes for those I cannot.
     Scary, huh?

     And now I've been told that I should be starting BCNU at 1:00pm. The doctor said, "You will not like it -- patients in your situation usually think it's the worst." He then told me how the drug causes severe agitation because it can cross the blood-brain barrier, due to the fact that it is delivered in an alcohol solution. Patients have restless legs, twitches, and bad jaw pain (clenching?) -- hence the Haldol.
     A little under two hours before I am subjected to that; I am spooked.

     But still, in Austin fashion -- BRING IT!

[8:10pm]
     Bah, the BCNU was baby food -- it was Gerber, my friends. Call it coincidence or not, but after the BCNU, my persistent nausea went away. Plus, I ate a good deal of my lunch! Who knows? Maybe it's waiting patiently for it to attack me unawares.

     When they administered the Haldol and Benadryl for the BCNU, I quickly found myself quite sedated. The nurse was describing the effects of the drug, but I had a hard time grasping all the details. In addition, when I tried to speak, I think my voice came out somewhat strained or slurred; it was difficult to talk. Then, I fell asleep.
     Occasionally, they would wake me up for vitals and whatnot, but I immediately fell asleep again. In fact, I pretty much slept through the whole thing. Not bad!
     So I didn't get all irritated and agitated, and I didn't snap at anyone (including my mom) -- you couldn't really picture me snapping at people, could you?

     Some time later, I felt like eating the rest of my dinner: a feast consisting of pears, 3 jellos, 2 applesauces, and a dinner roll. For the first time since Friday night, I ate most of it! Tomorrow, I will try a light meal and see how it goes.
     The doctor was talking about putting me on a nutrition IV, but I think I'd like to avoid that if possible. Though I basically haven't eaten for a couple of days -- maybe they draw the line at 3 days. But, the way I'm feeling right now, I should be eating bacon by tomorrow -- perhaps even BACON!

     So it seems that the BCNU is a cakewalk. Also, that the transfusions are very useful. My energy is somewhat back; my nausea is gone. So... sweet! This SCT may be easier than I think.

     All I have to worry about it my mom tripping over my IV line again. Yes, the pole almost came crashing down, and a pump module with it's IV bag were ripped to the floor. Fortunately, nothing was "pulled" on my end.
     To mom's credit, the nurse almost did it as well. But to the nurse's credit, I was somewhat fumbling with the line as well.

     Right now, I've got the xbox 360 set up. So, back to the games! Wahoo!

[10-27-08] The Early Bird

2008-10-27T14:36:00.000-07:00

[2:37pm]
     Yesterday was crazy.

     It started with my dose of Gemcitabine and Navelbine -- both drugs that I tolerated relatively well last time... well, except for a headache.
     Yesterday started out no differently, but it quickly turned South. It started out with some pretty bad bathroom-related problems, then ended up turning into some pretty annoying nausea and general icky feeling.
     At around 8pm, the nausea got worse and I could feel that familiar burning sensation in my eyes -- I knew I had a fever. The temperature read 100.4, so I decided to take some Tylenol and check again in 20 minutes or so. The second reading was 101.4, so we decided to head to Stanford.
     The thing is: I knew that this fever was due to the Gemcitabine/NAvelbine -- in fact, my nurse told me to ignore any fevers that I may get for the first dose of these two drugs. But, since I am so close to the transplant time, it's better safe than sorry.

     We walked right into the BMT unit and I presented myself. I told the nurse that I was instructed to report to the BMT unit if I had a fever for my second dose of this chemo, and that it was probably caused by the chemo. Apparently, I should've called first. Strange, I thought they explicitly that I didn't need to call first -- "Do not pass go, head straight to BMT ward."
     But that wasn't the first mistake I made this evening. I also shouldn't have taken the Tylenol -- since my fever could be naturally be higher than it was at present. Then the nurse asked: "Where's your mask?" Apparently, I was supposed to be wearing it this week, even though my white counts were perfectly fine. Ack! Oh well...

     So, the nurse decided to admit me. She also had to call the attending physician -- who had to drive from her home in San Francisco at 10:30pm -- to evaluate me. By then my fever was 102.0.
     They hooked me up on various fluids and anti-biotics, and re-checked my vitals every 20 minutes or so. I also had more Tylenol, but my fever would not budge one bit. In addition, my nausea seemed to get worse along with the fever -- I couldn't lie down because that would make me feel sick. Mostly, I tried not to move. Then, my mom went home to collect my belongings and bring them to the hospital.
     Things got even more frantic when they noticed that my blood pressure had dropped to 86/40, when it was normally 125/70. They restricted me to my bed and kept asking whether the room was spinning or that I felt dizzy. I only felt a bit dizzy when I stood up, but I did feel a bit weird. Then more bags of stuff were brought in and I had my vitals all throughout. They also did some blood cultures and urinanalysis.

     Long story short: it was a very tough night. I had an interruption every 15 minutes or so -- it made sleep quite difficult.

     Fortunately, my fever broke around 9:00am this morning and I feel much better. My blood pressure is normal. All that's left is a food-phobia and headache. By food-phobia, I mean that the mere concept of eating real food makes me feel a bit sick. Get this: I had eggs and bacon this morning, and I didn't eat anything, including the bacon! You know there's something wrong when I don't eat my beloved bacon.
     So, all I've been eating today is Jello and Apple Sauce. I'm actually quite hungry, but what can I do?
     The strange thing is that I've never had an aversion to food, even throughout all the chemo I've had. Why start now? Gemcitabine and Navelbine are truly vicious drugs.

     So, anyhow, I've been admitted into the BMT ward and will be placed in my isolation room later today. My in-patient BMT starts early!
     I think to myself: After last night, I'm in for quite a tough ride. It's only going to get worse from here on out.

     It brings to mind what my doctor said when he went on rounds today. He told me about how they like to do psychiatric consults early in the BMT process, so that "you can answer coherently because you wont be on a bunch of pain medications yet." So it looks like I can expect a level of pain that would require a lot of gnarly medications. Eep!

[5:53pm]
     Mwa ha ha! Large interweb pipes; Austin happy.

[10-25-08] Bad Daydreams

2008-10-25T13:20:00.000-07:00

[1:20pm]
     We drove all the way down to Stanford to find out that my infusion was scheduled for Sunday, not Saturday! Whoops! We were told, most recently, that the appointment was Saturday, but you've always got to double check everything... be ever vigilant with health care.
     There was those times my cisplatin dose was less than required... and the countless times I've had to specify that it was Hodgkin's Lymphoma, not non-Hodgkins Lymphoma.

     On another subject, my hair is starting to grow back quite rapidly. My head no longer feels smooth, but scruff -- the change is nice. And I've got my chin hairs back! Still... I don't like it. I want maintain my chemo intensity.
     In addition, I had some trouble sleeping last night because I was itching furiously. Still, the itch persists. It's the all-too-familiar Hodgkin's coming back to taunt me and remind me that he's still there. Persistent little bugger.

     Now, maybe it's because my spirits have been a bit low lately... But, with the itch coming back, it feels like all this has been for nothing. 8 months of small chemo; doing nothing but making the tumor more resistant to chemo. Bah.

     Then, I always ask myself: What if the BMT doesn't kill the tumor? or... What if, after a successful BMT, the tumor returns?
     I start to daydream about that possible future... I'd like to think I'd spend my last days bartending on the Galapagos islands, but that's not really me -- is it?
     I'd probably jump from clinical study to clinical study, subjecting myself to all sorts of interesting drugs in order to extend life. Then there's be the last-ditch allogeneic (bone marrow from someone else) transplant.
     I wouldn't really accomplish my dreams, I suppose. I'd have to cancel grad school to accomodate treatment. Or, if I ignored treatment entirely, would I really be able to afford grad school? Or, for that matter, would it even make sense?
     So, I'd settle for a job in the here and now. Instead of learning graphics programming, AI, and general video game programming, I'd focus on more practical (in-demand) skills such as database programming, and network programming. That type of programming is actually a bit easier for me, so I'd be able to be marketable relatively soon.
     So, I'd get a low-paying programming job. Which would be great, for a time... but then the illness would present a problem. Treatment may have to be intensified, and I'd probably be unable to work and go on disability or something.
     At this time, I'd feel like I have to contribute to society somehow. I mean, I haven't had my programming job long enough to make real substantial developments that would benefit many. So, maybe I'd start writing a novel... or composing a piece of music... something to leave behind.
     Too bad I'm infertile and didn't have enough time to become financially capable of starting a family. That's always been my primary goal in life. A meaningful career I love and enjoy comes in second. To lose both... sucks.
     Given that possibility, how should I act now?

     Anyhow, I'll stop there. That's my career/goals daydream, I also have a relationship one, but that's a bit more depressing. Then there's a bucket-list one, a cancer-survivor one, the ultra happy one, and more. I daydream a lot. Good or bad, these are my daydreams, and I'm not ashamed of them. I'm not trying to focus on the negative or anything, but this is what I'm thinking, and I promised to write what I'm thinking... And with the itching returning, I've been thinking about the negative possibilities.

     On an entirely different note, there was a glitch in my re-admission process which caused it to be delayed by 5 days. And, as luck would have it, all the classes I need or that would be practical have been filled. So I'm waitlisted for all my classes -- yet more to stress about.
     Hence the bad mood. Excuse me.

[10-23-08] Mariska!

2008-10-23T22:42:00.000-07:00

[10:43pm]
     I got a new niece! Mariska was born today in the early afternoon, and everyone is fine and happy. I haven't seen her yet, but I plan to get a ride down to Santa Cruz for a day visit on Friday -- to hell with the 20 mile radius, I feel quite nominal.

     As for me, well I've just been playing my video games... I'm trying to waste as much time as possible -- I can't wait to get this started! It's like when you're a kid and you're waiting for Christmas... a valid strategy is to sleep excessively :P

     To bad I can't sleep to well. It's funny: most people look at their alarm clock with a sense of dread in the morning. I do as well, but in a way that is totally different than you'd expect. One typically says, "Oh man, it's almost 7:00am -- I only have ten more minutes of sleep." I, on the other hand, say, "Oh man, it's almost 7:00am -- last time I was awake was at 6:40am.. it's only been 10 minutes, so little time has passed."

     Oh well. It's mostly the mattress, I think. Perhaps I should score a Tempurpedic. But those hospital beds were darn comfortable... I wonder how I'll sleep there... So much anticipation!

[10-21-08] It starts...

2008-10-21T16:09:00.000-07:00

[4:09pm]
     The BMT process has officially started.

     Today, I received a dose of Gemcitabine and Vinorelbine (Navelbine). Unlike all the other chemotherapy drugs I will take, these two are the only ones which will be a "normal" dose... I believe Gemcitabine is used for pancreatic cancer, and I have received a comparable dose. Because of this, I expected these drugs to be without side-effects...
     I was slightly wrong -- after an hour or so, I got that familiar "delicate stomach" feeling and a headache. The headache may be due to exertion, however -- I can tell that my red counts have been on a slow decline. (A few days ago, I had my counts. I was better than I was pre-transfusion, but still moderately anemic.)
     It was nice that the infusions together were under an hour.

     Also, I was equipped with a continuous mini-IV pump. Heperin is currently flowing into my catheter at a measly 0.5ml per hour! This is to prevent those pesky blood clots. I have it attached like a fanny pack -- the nurse mentioned holding it like a purse, but what sane male would do that? It's not as bad as I thought; it is pretty portable (only 100ml bag) and maintenance-free.
     In fact, the nurse spent quite some time explaining how to control the pump in case of any trouble -- it is very intuitive. She repeated her instructions several times -- I guess some cancer patients are so zonked out that it is necessary. I guess I will be one of them soon enough.

     Since today marked the first day of my BMT, many nurses expressed their certainty of a cure or an easy transplant. I found such optimism a little bit disturbing. Firstly, both assertions of certainty are not statistically accurate -- I'd say you need 98% or greater to use the terms "will be" or "certain." Otherwise, I'd recommend "believe," "feel," or "hope."
     Secondly, it makes sense that the nurses have a solid grasp of cure rates and problem-free BMTs. This being true, then it seems that the nurses were willfully expressing a false belief of certainty in a positive outcome. I'm sure they believe that I will be cured or do fine, but I doubt their certainty.
     So, why were they doing this? Is saying stuff like "you will be fine" the polite thing to do? Will reality be changed by denying uncertainty? OF course not. If anything, I believe that recognizing potential obstacles and challenges will help us deal with the future. I want to be told to expect a "shitty time" and to be reminded that a remission post-BMT is probable, but not certain. I don't want superstition to be a part of my treatment.
     Don't get me wrong -- I'm not denying the existence of self-fulfilling prophecies. For example, I believe that going into a test with a positive attitude will yield higher scores. But a positive attitude strengthening the good cells and making the bad cells commit suicide... nah.

     Perhaps my lack of faith is a character flaw... but I don't feel that way. I have thought a lot about my spirituality and beliefs through all of this; the prospect of death can do that. Oddly enough, I find my lack of spirituality/faith a source of strength. I am comforted in a grounded and absolute reality, and I find the prospect of nonexistence... peaceful. It certainly didn't bug me before I was born. :P

     So, although I may not be certain of the outcome... I am absolutely certain that everything will work out fine in the end. Strange, huh? An absence of faith is a sort of faith in itself.

     Anyhow, for good measure, I should probably counter all that philosophy with something superficial... hmm... Oh, I can't have beer anymore! Noooooooooooooooooooooooo... I'm gonna miss that. When I come out of this, I'll probably be a lightweight with my alcohol -- happy with just a six-pack. You betcha!~

[10-19-08] Living in Stanford Area!

2008-10-19T18:57:00.000-07:00

[6:59pm]
     I just got my laptop connected to the wireless internet in my new (temporary) home! Yup, I am currently living in the Stanford area!

     As I started unpacking my stuff, I realized that I had forgotten a few absolutely necessary things:
   1: PC Primary Power Cable
   2: Stereo Mini (male to male) Cable
   3: My CD Wallet

     *sigh* I always do this. Oh well, fortunately, I can salvage the PC primary power cable from my laptop power supply for the time being. Also, I can use a headphone with a female to female stereo coupler... so, I will be able to play my xbox. *whew* Gotta love emergency audio adapters!
     Still, it would be nice to have everything in order.

     See, I've been making a list and constructing my 6-week mandatory-item nomad pack. What do I need to survive in any environment for a period of 6 weeks? Not surprisingly, technology is a large part of it.

     Anyhow, I've got a lot of work to do before I can fall into blissful slumber. (As you can probably guess, getting my computer up and running on the internet is the first item in that list) :P

     Ta ta for now! Chemo in two days! Woohoo!

[10-17-08] E-Day

2008-10-17T19:51:00.000-07:00

[7:51pm]
     Oct 17th... an historical day for anyone who has lived in the bay area. More specifically, around 5pm on Oct 17th, 1989. Can you guess it? Yup, it's Earthquake Day! Today is the day of the devastating Loma Prieta Earthquake, not to be confused with the San Fransisco Earthquake (in 1906). This 1989 earthquake has an epicenter in Santa Cruz County, baby!
     As you can tell, I'm proud to have been in it. Does that seem strange? I mean, it's not like surviving the 1989 earthquake took any talent or skill. Nevertheless, it's a part of my history... and despite the devastation involved, I look upon the experience fondly. In fact, I thought it was cool at the time; the shaking was fun.

     Anyway...

     I had an appointment at Stanford today. I felt that I had enough stamina to ride my motorcycle there and back. I did, but that doesn't mean I'm not beat! What a trek! Especially with the traffic. *ahem* I digress...

     Basically, this appointment was to overview the next phase of the BMT process and obtain the final doctor's "go ahead."
     My doctor said everything looked fine, and that I was ready to start the chemo on Tuesday! I am still anemic (HCT 27, HGB 10), but my white counts were good. So, yeah, the next phase is a go. It was a very short appointment.

     Then, my scheduling nurse came in and went over the some treatment details and the side-effects associated with very high doses with these drugs.
     The first two drugs, G and N, are fairly innocuous compared with the other drugs. I should expect nausea/vomiting on a level comparable with ICE or Stanford V -- no problem. The big downside is that they are very concerned with mini blot clots perforating my liver. Strange, huh? So, to prevent liver damage, I have to be on a continuous IV of heparin over the next week (starting Tuesday). So I have to carry a little bag and pump wherever I go. Bah, something more to get in the way of one of my favorite things: starting the day off with a refreshing hot shower. How am I gonna manage that? I already have to spend quite some time waterproofing my catheter dressing each morning.

     Next comes the BCNU (Carmustine), which is administered when I am admitted. From what I gather, this is the most hardcore of the drugs that I will receive. Other than the typical side-effects, this one has some strange effects that will occur for a short duration while it is being administered.
     My nurse says to expect a severe headache for up to 24 hours... OK, no problem. Then she tells me to expect to be extremely irritated while the drug is being delivered. I'm doubtful at first: I've heard about chemo causing this sort of thing before, but never really experienced it myself. But, apparently, the nurses go as far as recommending that loved ones leave the room. My nurse has personally heard shouting, cursing, and general meanness from people who have received this first-hand.
     Still, I can't imagine getting all angry just because of a drug. But then, get this: she tells me that they prescribe a dose of Haldol to patients before they receive BCNU. Haldol! The extremely hardcore sedative anti-psychotic! How's that for strange! This is the stuff they give to patients so unruly that they have to be doped up so that they don't hurt themselves or others.
     Ok, maybe I can see myself a little irritated then. I mean, if they're giving you Haldol for cryin' out loud, it must be pretty bad.

     Then, the next two drugs are VP-16 and Cytoxan. Same chemicals, but at ridiculous doses this time. Well, the Cytoxan I will receive will only be at a slightly higher dose than it was for my mobilization, but that was a ridiculous dose anyways.
     Other that more severe versions of the typical side-effects, I can expect (read: very common) a large amount of skin irritation and mouth sores. The skin problems can get so severe it peels off (and is painful), and the mouth sores can get so bad I may not be able to eat. Both usually requires some amount of pain medication, ranging from moderate, to the IV morphine clicker.

     As for the transplant itself, it is pretty uneventful. A 5 minute IV delivery of my old baby stem cells. I could feel a cold rush, some chest pain, a little anxiety, and smell like garlic (preservative) for a while.

     And that's that! Sounds like fun, eh? :P

[10-15-08] Birthday Day

2008-10-15T22:58:00.000-07:00

[10:58pm]
     Today I did nothing... it was all I had hoped it would be. Nothing by conventional standards, that is: I played my new video game and read a little fantasy fiction.
     In other words, I've turned into a slacker. It's a bit annoying, in fact. A few days ago, I sat in front of my computer with the intent to learn something and progress in skills essential to my career path. I couldn't motivate myself to do so.
     Under normal circumstances, it is difficult to delay gratification for future goals. In my circumstances... well, I'd rather wait for a job interview before I buy a new business suit. That money could be used for fun, instead!

     Regardless, I am becoming more adept at being a slacker. Sounds strange, huh? I mean, how hard is it to be lazy? Actually, it was quite distressing at first. I felt this huge pressure to accomplish things. Not to mention the enormous guilt attached to myself when I fail to accomplish those things. Then, there's the conquest of boredom: one needs to keep oneself constantly entertained... all those extra hours of the day.
     I remember this time, after finals, when I found myself scraping off sticker adhesive off of my dorm door. I was moving out and I had to leave the dorm in pristine condition. However, I was doing this immediately after my last final (In perhaps my most difficult set of finals ever). I recall setting my backpack next to my door and truly enjoying removing that adhesive... with a blissful sense of freedom.

     My point is that anything can seem fun when you've spent 100% of your time on work. I didn't have time to eat or socialize or anything during those finals.
     Now, with all the spare time in the world, the equation works in reverse. One becomes extra picky about the quality of the television shows that the watch, the video games that they play, or the books that they read -- with more supply, comes higher standards.

     So conquering boredom can be difficult at times.

     Fortunately, I've encountered an exception book to read and an exception game to play. So I'm good... for now :P
     But, of course, I'm not going to hole myself up! Wednesdays aren't opportune for birthday celebrations -- there'll be fun on Saturday.

[10-13-08] Eek!

2008-10-13T13:34:00.000-07:00

[1:34pm]
     Eek! How'd I manage to miss my 10-11-08 post? Sorry about that! It's hard to maintain routine when you're away from home. And I've been away from home...

     I just got back a few hours ago. First, I spent the weekend with Liz in Berkeley, then a day at my sister's house.

     Sometime last Thursday I realized two things: 1: I have enough energy to do things again! Including driving my motorcycle to Berkeley. And 2: The energy probably wont last, so I better take advantage of it.
     So, I drove to Berkeley and had a blast! Liz and I watched a few movies, ate some good food, had some good conversations, and rented a house! Yes, a *whole* house! It's a small house, of course, but total luxury for someone like me who is used to a 12'x12' dorm room. I even get an office and my own bathroom! :P Liz will move-in about a month before I do, since I'll probably be in Stanford until about Dec. 12th.
     Then I'll move-in, get settled, and return to school yet again! Here's to being a productive member of society!

     Speaking of which... time to slack off some more! I have my birthday in two days, then on the 17th I will return to Stanford for my pre-BMT appointment! Treatment starts on the 21st. Plus, my mom shows up on the 15th (from Kentucky)... so a lot of stuff is coming up!

     I'm looking forward to more chemo. I mean, I've got millions of little hairs on my head now -- that's not cool! Now is not the time for cellular springtime -- it is Winter!

[10-09-08] The Austin Pain Scale

2008-10-09T22:40:00.000-07:00

[10:40pm]
     I've been spending the day cataloging my video game collection. What is the average rating? What is the genre? Is it multiplayer? I am preparing. Like a squirrel gathering acorns, I am saving my games for the winter ahead of me.

     Then, I think back to how Barbara said how I liked to "quantify the subjective." It's true; I do. In fact, I've been doing it since I was like 5 or so. I've always annoyed people by incessantly asking for a "favorite," "which would win", or a "top five." Kinda like that guy on High-Fidelity.

     Maybe I'll post a few of my neurotic lists, sometime. :P

     Anyhow, back to the conversation with Barbara... We began discussing this after a nurse looked at me skeptically when I described my status on the pain scale (due to Neupogen back pain). Yes, the pain scale, again.
     I obsess, I know. But it's such a perfect example: level of pain seems like such a subjective experience! There's no pain indicators attached to our heads or pain meters that we can attach to our brain stem. In addition, the nurses and doctors place such importance on the number that you give them. Naturally, I can't resist the challenge to quantify this.
     Back to the nurse. So I told her that I had a pain rating of 5 and she looked at me like I just picked my nose. How *dare* she question my objectivity! I then commented to Barbara, "If only she realized how much thought I put into accurately providing my pain rating."

     I then thought about actually writing it out. So, here it is:

     The pain scale is on an integer scale of 0-10, with nothing more than faces to assist in the self assessment.

     Although there are many different scales, this is the one I see the most in California hospitals. So, here's the criteria I use:

Pain 0: No Pain.
Pain 1: Detectable Pain. However, it is not sufficient enough to do anything about it. It is neither annoying or distracting. If a Tylenol and a glass of water was 2 feet away, you wouldn't take it.
Pain 2: Annoying Pain. You would take the Tylenol, but would have no problem watching TV or browsing the web. Not sufficient to distract you from your at-rest activities.
Pain 3: Distracting Pain. You would really like some medication at this point. If the Tylenol isn't near, this is where you'd start digging through your bathroom cabinet. Why not? You can't really enjoy watching TV, and reading a book is out of the question... This pain needs to be solved. Sleep would be possible at this level, but difficult.
Pain 4: Sleepless Pain. Medication is needed. Over-the-counter medications may dull the pain a little, but they wouldn't really help -- Vicodin would be nice. Sleep is very, very difficult at this level. Imagine not falling to sleep for at least three hours, then waking up every 30 minutes due to pain. At this level, I'd say getting 2.5 hours total of scattered sleep in a period of 8 hours is likely. (The pain scale, to me is a bit like the Richter scale: moving from 2 to 3 is a bigger step than moving from 1 to 2, and so on.)
Pain 5: Fidgety Pain. Narcotic medication is mandatory. If a doctor recommends Tylenol, then you should request a new doctor. If you are at home, without narcotic pain meds, then you'd probably start pondering the pain relief given by getting incredibly drunk or repeatedly banging your head against the wall. We're not in ER territory, but the pain is severe enough to cause you to constantly reposition yourself in an effort to reduce the pain -- fidgeting. Sleep is downright impossible.
Pain 6: Frantic Pain. Narcotics would help; Morphine would probably be best. If I were at home, then I'd consider going to the ER. It is a bit difficult to speak properly, due to abrupt spikes/stabs/pulses in the pain. You cannot stay still; you need relief.
Pain 7: Physiological Pain 1. Morphine is mandatory; go to ER at this level. This is where the pain is painfully obvious to doctors on a physiological level. Breathing and speaking become erratic, due to abrupt spikes/stabs/pulses in the pain. Envision grunting. Your pulse is way up.
Pain 8: Physiological Pain 2. Morphine may help slightly; something stronger may be best. All the previous physiological symptoms, but more so. Visibly trembling/shaking.
Pain 9: Physiological Pain 3. Something stronger than morphine is mandatory. All the previous physiological symptoms, but more so.
Pain 10: Fantasy Pain. The most pain you've ever experienced, or could fathom experiencing.

     Ah, I love to quantify.

[10-07-08] ... and time passes.

2008-10-07T21:32:00.000-07:00

[9:33pm]
     With no treatments or medical appointments, I am allowed a few moments to stop and think about things. Most of the time I think about the future: making it through school... achieving a career... a family. Some of the time, I think about how much my path has derailed.
     This is why keeping busy can be a blessing. This is also why school was very helpful during my initial treatment. Gotta keep moving...

     But don't get me wrong -- my thoughts may be a bit deep right now, but I'm certain the BMT will be a success. I always daydream and evaluate possibilities. It's part of my personality; I always do it. What are the probabilities? How can we plan for all eventualities?

     For example, last Sunday I was talking to Liz about our carefree lifestyle. I mean, it certainly isn't carefree, but it should be. We stress about work, school, family, money... but when it comes right down to it, everything will be fine.
     To illustrate my point, I began to think about the worst possible scenario. I mean the worst: like a nuclear strike destroys California while I am out of state. Everyone I know is gone; everything I own is gone; I find myself in the metro station without a dime. I could work at Taco Bell, or as a bagger in the local grocer. It's not high-tech, but at least I could get the job quickly, and it would be enough to feed me. Not enough for rent, but I could sleep under the stars in the local redwood forest. If there's no jobs available, I'm sure there would be some government aid or something. No government aid? Even then, I'm certain I could figure things out.
     So if you're stressed out about a midterm, for example, you can think to yourself: It is alright if I fail this. In fact, it is alright if I fail school, lose my job, and get evicted. At least I have food. Even if I don't have food, at least I'm not in pain. If I am starving and in pain, well at least my family is alright. etc...etc... Things could be always be worse... always.
     Kinda makes the midterm seem a little less important. Kinda makes life seem like it is made up of a bunch of little things, instead of all big things.

     My point is that thinking about how things can get worse can make one appreciate the present, maybe even make it a bit less stressful. That is, as long as you don't get all depressed and emo about it; gotta keep things in perspective, of course.
     But, then again, keeping busy prevents you from thinking at all. And that's nice too.

[10-05-08] Enjoy it!

2008-10-05T19:47:00.000-07:00

[7:48pm]
     What a nice weekend I just had in Palo Alto! On Saturday, Liz and I went shopping, watched a movie (Religulous), and ate a fancy dinner. Today, we ate a nice breakfast, created a beautiful ceramic plate, and watched another movie (Blindness). Quite an excellent way to celebrate 8 months!
     The arts and crafts portion was kinda neat. You basically walk into the shop, pick out a piece of ceramic art, and then paint it with glaze. They charge you for the art and paint, then you paint it and they fire it in the kilon. You pick up your finished masterpiece days later. Pretty nifty.
     As for the movies, Blindness was a bit disturbappointing and Religulous was delightfully thought provoking.

     Nice to digress from cancer for a bit.

     Actually, I'm going to do just that; I don't feel like talking about cancer right now. So I wont. Except a quick update: they collected all the stem cells they needed on Friday and gave me two units of blood. I feel human again! Joy! I loooove bloood. Plus, at this point, I have a two week vacation from all health/cancer related stuff! After that comes the hard part. But until then...

     I'm going to enjoy my reprieve! (Edit: Respite?)

[10-03-08] Apheresis

2008-10-03T11:48:00.000-07:00

[11:48am]
     I am currently being apheresicized at Stanford; it is a fascinating process. The machines (apheresicizometers) look like they were made in the 50's -- they are huge clunky things with large spinning knobs; the bottom half looks like a freezer. My nurse says that my apheresization (ok, I'll stop now) should take about three hours.
      *ahem*

     Anyhow, the catheter is working great! Joy! So, the surgery was definitely worth it! And it looks like I'll be able to sleep on my side again. Joy, Joy! And after they've collected enough cells, I will no longer need to get labs done or inject Neupogen! Also, I will get 2 units of bloooooooooooood today! Joy, joy, joy!
     It's the little things, folks; the beaten dog analogy. For example, earlier I thought to myself: "This is great! My back isn't killing me!"

     Oy, they gave me Benadryl for the pre-transfusion. So I need to nap now.

[10-02-08] Catheter Placement #2

2008-10-02T22:21:00.000-07:00

[10:21pm]
     Things have been ridiculous...

     First, I've been getting very little sleep lately. Catheter pain has been preventing me from sleeping on my side. Since I can only sleep on my side, this has been problematic for the past week or so. But last night was ridiculous.
     If it wasn't catheter pain keeping me up, then it was my insane Neupogen-related back pain. If it wasn't that, it was a slight fever (100.3). And, of course, we were on tiptoes because a fever of 100.5 or above merits an ER visit. So I got next to no sleep last night.

     Second, I am not supposed to eat 12 hours before the procedure. So no food for me after midnight (what am I, a gremlin?).

     Accordingly, you have a starving neutropenic anemic patient that is just recovering from a fever and complete lack of sleep. That is my explanation for my decrepit state today. AFter the 2nd transfusion: feeling much better. After no sleep and no food: feeling not so good.
     To articulate, I recall lying on the hospital bed. My back was killing me, so I repositioned myself so that I was sitting upright. That act alone raised my pulse to 120, gave me an insta-headache (due to lack of oxygen to brain), broke a sweat, and caused me to wheeze rapidly for 5 minutes or so.
     Yes, it was ridiculous! I had to take 3 breaks on the way to my procedure and I was pushing myself so hard that I got lost. Barbara commented that I wasn't thinking straight due to lack of oxygen. From that point on, I was so tired I was docile. You could have said that Palin was smarter than Einstein and I probably would've nodded noncommittally.

     The procedure itself was much better than last time. They couldn't figure out why I had catheter pain and defective blood return -- the x-rays all looked perfect. Regardless, the best course of action was decided: remove the "defective" catheter and place a new one on the other side of the chest.
     So that's what they did.

     Also, I made sure to articulate that lots of pain was not acceptable. They want to distinguish between sharp pain and pulling/pushing. For some reason, they believe that "dull" pain associated with pushing/pulling did not exist -- that the mind somehow interpreted this weird pushing feeling as pain or something. This was told to me by several nurses and the doctor, so I took it seriously. I remember sitting there on the table saying, "Yup that's pain. It's a dull pain, and I know you're pushing/pulling, but it's still pain. Yup, that hurts. And I'm trying to be especially objective here." Or some such.
     Still, everything went wonderfully. In fact, the catheter was placed on the right side of my chest with little pain at all. Removing the previous catheter... that's where extra time was spent. Something was wrong about that side; maybe it's because the big tumor is there... or my veins are sensitive on that side or something. Who knows.
     And the nurses were crazy. They were all female jokesters -- casually engaging in banter while singing along to their Mo'town CD. I recall on several occasions them saying something like: "Glad you probably wont remember this; I'd hate to see the look on your mom's face when you tell her that you were cut up by a bunch of crazy dancin' nurses." I assured them that I would remember everything; they didn't believe me.
     At one point, the doctor asked the nurse "how is he doing?" (The doctor can't see my head because a big blue sheet is draped over it). She replied, "Wow, he's actually crying!" I heard the doctor, startled, say "what?!?" And I said, "Hey, I'm not crying!" The nurse smiled.
     At another point, they tried to get me to sing along with a Mo'town song. I told them: "You haven't given me nearly enough drugs to get me to do that!" They laughed and said, "Is that a challenge?" Flatly, I replied, "Yes." Then I pointed out the ethics of making a drugged patient entertain the nurses.

     After the procedure, I got a call from the apheresis nurse: "You've been having lots of bone pain, right?"
     "How did you know?"
     "Your white blood count went from 1 to 12 in a single day; your marrow has been working overtime."

     So, yay! I get apheresis tomorrow! Naturally, they want us there at 7:30am. So I'll have to get up at 5 or so. I better get some sleep.

[10-01-08] Blood and Fire

2008-10-01T14:49:00.000-07:00

[2:49pm]
     Bloooooooood... need more bloooooooood.
     I've had my first taste of it; I feel like a vampire. I want more. The effect 250ml of blood has on someone who needs it is profound. I didn't realize it until I got the 2nd transfusion, but I really needed it.
     Yes, the 2nd one... I'll back up.

     Yesterday, I started with a 2 hour (1 unit) transfusion followed my my normal blood work at another lab. When I got home, I was exhausted, and fell right to sleep. I awoke to a phone call from one of my nurses. "You need another transfusion," she said. Apparently my tiredness correlated quite well with my blood results. Here they are:

   Hematocrit 24.3 -> 23.9 (after transfusion)
   Hemoglobin 8.5 -> 8.6
   WBC 0.3 -> 0.2

     Weird, huh? Instead of going up, my hematocrit actually went down! I suppose I'm right at the Cytoxan nadir; imagine what my levels would be if I had no transfusion!

     So, today I got another unit of blood. And, unlike yesterday, I actually feel a little more energetic. It's actually mostly mental; I still get just about as winded in my walk to the fridge or bathroom. But what I really notice is my improved concentration and newfound clarity of thought -- I must've been a dunce these past days! And I didn't even realize it!

     Next topic: catheter. I hate this catheter. I spend all this time maintaining it and it doesn't even work properly. I mean, the Cytoxan had to be administered via IV because the darn thing wouldn't give blood return. Yesterday, another attempt was made to achieve blood return: it failed. So, I called my Stanford nurse and tried to get this darn thing fixed.
     Oh, and blood return isn't the main reason. The truth is that it hurts if I try to lay on either my left or right side. I guess it's because my arms are "squishing" my chest or something? Regardless, I've had many nights of bad/little sleep because the darn thing hurts. And I can't sleep on my stomach or back -- that hurts my stomach! So yet again I am faced a similar dilemma: sleep with pain or no sleep. I've been having to stay up late balancing that equation... no fun.

     The good news is that my nurse has scheduled me for a procedure tomorrow! Yay! They're actually going to replace the whole catheter with another one, and use a wire or something to help facilitate it. So it should be a quicker procedure than the last one. I believe it will require conscious sedation or something, because they're telling me not to eat after midnight and whatnot.
     Also, Barbara says she's on point with getting my doctors to be liberal with the pain meds. I don't want another couple hours of me complaining (to annoyed staff, I'm sure) that I'm in pain.
     The doctor usually tells me that I wont feel any pain before the procedure. When he does this, I'm doing to ask him to tell me his full name, date of birth, and social security number during the procedure. If he's given me enough meds (like he says he will), then I will forget all of it. Otherwise, I will try to comfort my post-trauma with a little identity theft spending spree :P
     Last time, they told me that I wouldn't feel a thing and would most likely forget the procedure. P-shaw! I could recite most of the music tracks on that mix CD they were playing (mostly, Beach Boys, btw).

     Now that I think about it, the Beach Boys are pretty good. I never realized that until I was forced to listen, in detail, to their music. They have some really melodic slow songs.
     I digress.

     Last subject: Back Pain.
     I think I figured out why I had that ridiculous back pain ER visit a while ago. It was because I was given Neulasta (an extended version of Neupogen). I just started feeling the similar pain yesterday night. Fortunately, it wasn't nearly as bad as last time, but still bad enough so that two Vicodin won't get rid of it (helps, though).
     The pain went away this morning, then came back in the middle of my transfusion. Fortunately, my doctor approved some Vicodin for me and I got a prescription called in. Hopefully it will help; if the pain gets any worse I may be screwed.

     Believe it or not, my Stanford nurse explains that the pain may be a good thing. It seems that a shot of Neupogen is more effective when more white blood cells are present. In addition, when Neupogen causes your marrow to "work" to make more white blood cells there can be pain. The more your marrow works, the more pain (in some people).
     For example, if I had a WBC of 0.1 and took Neupogen, then I would be lucky to get a WBC of 0.3 on the next day. Plus, I probably wouldn't feel any bone pain because my marrow isn't working that hard.
     On the other hard, if I took Neupogen with a WBC of 10. Then I could get a WBC of 20 on the next day; my marrow would be smokin'! And there would be a lot of pain. This is what happened after ICE #1 and I had to go to the ER: I was given Neulasta preemptively so that I could get more ICE within two weeks. My WBC at the time was 9, I believe.
     Oh, and guess where the most WBC producing marrow is? The region around the lower back...so says my nurse, but I'm still skeptical. Regardless, the lower back is up there, I'm sure.

     So, even though I had a WBC of 0.3 yesterday. My nurse is willing to bet that this number jumped dramatically, as indicated by the pain.

[9-29-08] Transfusion

2008-09-29T21:27:00.000-07:00

[9:27pm]
     Tomorrow I get my first transfusion -- how exciting is that?? The concept is appalling! I mean, someone else's blood is going to be put into my heart. That's pretty, uh, intimate, or something...

     Well, whoever it was, I appreciate it... even if they only donated blood for a few bucks. Plus, consider the blood type: O negative rocks!! Universal donors: that's some valuable blood there. Of course, it's worst to be on the receiving end of that equation, but it is cool nonetheless.

     The strange part is how comfortable, in comparison, I am with chemotherapy. Chemo is a chemical, that means it's "clean" by definition, right? Plus, it's usually clear. On the other hand, blood just seems so dirty. Whoe knows where that's been! Plus, it looks like it's clogging up the IV line... all dark and whatnot, blood stains are hard to get out!

     ...of course, I'd rather a blood stain than spilling chemo on myself. That stuff can be vicious.

['9-28-08] Looks can be Deceiving

2008-09-28T16:54:00.000-07:00

[4:55pm]
     Today was somewhat embarrassing. Liz, Barbara, Gloria, and I were planning on attending a symphony. One of the pieces was Rachmaninoff's "Rhapsody on a Theme by Paganini," which is a total selling point for me. So I *had* to go. The downside: I had to wear my HEPA/Vader mask.

     Naturally, I was the only one wearing such a thing. So I was really standing out. At first, I panicked about what they thought about me: that I was infected with avian flu or something. But then, I got used to it. It wasn't all that bad, plus Liz was quite comforting.

     There was only one comment about it. The guy next to me asked rather bluntly, "So, why the mask? Are you contagious or something?" I told him I wasn't, then he went into a lecture about how masks are necessary for the people in Taiwan or something. Apparently, smog is the least of their concerns.

     Of course, during the symphony, my phone was off. During this time, I was getting calls from my local oncologist and Stanford. When I got home, I checked my messages: They got my labs and my blood counts were quite low:

   White Blood Count: 0.2 (Basically, I have no immune system)
   Hematocrit: 24.3 (For comparison, a hematocrit of under 28 merits a transfusion)
   Hemoglobin: 8.5 (I'm even more anemic, but we all knew that)

     So, my local oncologist is concerned that I might get a fever. Stanford expects the WBC to be so low, but does not want the RBC to be this low. Accordingly, I have a transfusion scheduled for Monday -- how exciting! Let's hope they can use the damn catheter this time!

     Speaking of catheter: it sucks. They must have botched the placement or something, because it is absolutely impossible for me to sleep on my side. It gets to be quite painful. So, naturally, I get no sleep. I try to sleep on my back, but then at some part of the night I turn to me side, and later wake up in pain.
     This has to be fixed.

[9-27-08] Feeling Better

2008-09-27T10:19:00.000-07:00

[10:19am]
     Woot! I'm feeling much better! Well, at least in two truly annoying aspects. First, I don't seem to have any nausea anymore. Second, my stomach seems to be conceding... in that I am being allowed to store things there.

     I know it's a gross subject, but I had to clarify this to Barbara on several occasions, so I thought I'd mention it here. Nausea can lead to vomoting, but vomiting does not necessarily need to be preceded by nausea. It can just happen. Spontaneously the stomach could reject something, and, well, there ya go.

     Anyhow, while my stomach isn't "steel" at the moment, it is at least stable. Which is quite nice.

     Still, I *am* ridiculously anemic at the moment... laughably so. Walking across the boat leaves my panting. I wonder what my hemoglobin is... I want my score recorded. :P

[9-26-08] Mobilization Routine

2008-09-26T13:25:00.000-07:00

[1:25pm]
     Cytoxan has been... difficult. However, I am somehow pleased that the side effects are so apparent -- it means it is working. Maybe there isn't a correlation between side effects and chemotherapy effectiveness, but it still feels somewhat reassuring to feel what a chemo-patient is supposed to be feeling.
     I mean, I was drinking beers and doing construction throughout ICE and Stanford V! Right now, water is difficult to drink and I can hardly get out of bed! Well, I'll get a PET/CT Scan in a few weeks; we'll see just how effective this has been.

     Anyways, I thought I'd post a bit of my routine to help illustrate my situation:

   7:00am Go to bathroom, take Rifampin (the drug that causes you to sweat and cry orange), drink lots of water, take Neupogen out of fridge, go back to sleep.
   9:00am Take 2mg Ativan (dissolve on tongue, don't swallow!). I need the Ativan to eat; I need to eat to take the other pills. Eat a bagel...slowly. Take the Zofran and Compazine (other two anti-nausea pills). Drink lots of water.
   9:30am Take Famotidine (reduces acid in stomach). Put Aquaguard over catheter dressing so that I can take a shower. Take a shower.
   10:00am Take Cipro and Welbutrin (stomach should be able to handle it at this point). Inject 3 needles of Neupogen. Drink lots of water.
   10:15am Take remaining drugs and flush catheter with Heparin. Brush teeth.
   10:30am Go back to sleep.

     That's my morning ritual. Takes a bit longer than reading the morning paper, eh? The key is to take things very slowly; my stomach is incredibly sensitive. Today I nearly puked from eating a bagel too fast, can you believe that?!? The bagel...my staple food. No wonder Barbara says I'm eating 1/4 what I normally eat.
     Then, for the most part, I spend the day sleeping. For some reason, I have the uncanny ability to sleep FOREVER now. Which is strange because I usually have difficulty sleeping. Oh well, I'll take it!

     On another note, I managed to withdraw from school yesterday. So, I'm out! It's a sad/scary feeling, but at least it allows me to move on. I'm no longer a student. Bah
     Also, I'll be heading to a symphony Sunday with Liz, Barbara, and Gloria -- can you believe that? That means I'll be wearing my Darth Vader HEPA mask in a symphony hall! That should get some stares. But if Liz is cool with her date from the dark side, so am I.

[9-24-08] A Day in the Life

2008-09-24T12:32:00.000-07:00

[12:32pm]
     Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.

     Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.

     You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?

     Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
     I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.

     Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...

     Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.

[2:13pm]
     After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
     After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!

     Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.

[9-22-08] Cytoxan Victory! ... Catheter Worries

2008-09-22T11:40:00.000-07:00

[11:40am]
     You heard it here first, folks: Operation Cytoxan is a go!
     Making it here, to this point, has felt like the admissions process into a prestigious university... Like a student waiting for a final exam to be graded, I waited today for my x-ray results. If they are good, I get it. Simple as that. And I got in.

     But there was more to it than that, of course. All the tests and exams and appointments to get into the BMT program... they're a part of this too. Since there'd be no Cytoxan unless they actually planned on going through with the BMT.

     So, here I am, in the bed, getting hydrated. It's great to put this catheter to use! And the beds here, they are beyond comfortable... I'm talking *space-age* mattresses. If you get up, to reposition yourself, the mattress automatically finds the points on your back with the greatest pressure and "softens" them. Points with the least pressure are "filled." The end result: ultimate comfort.
     I'm going to sleep well tonight.

     I have a roommate named Nick -- he has Myeloid Leukemia and has already been through the Allogeneic transplant. He's here for other reasons, something about liver problems.
     Anyhow, he seems like a cool guy. He's around my age. We just talked about movies, video games, and more video games. Kinda reminds me of T.J.

[12:30pm]
     I just got my lab results back:
      WBC: 3.6
      Neutrophil %: 65.5
      Hemoglobin: 9.8!
      Hematocrit: 28.3
      absolute neutrophil count: 2360 (Not neutropenic)

     This impressive thing here is my hemoglobin is at a record low of 9.8! My previous lowest was at 10.8, near the end of Stanford V. At that time, I was exhausted! Climbing up a flight of stairs left me very winded.
     So, why then am I feeling pretty energetic? Has my body just gotten used to low oxygen being delivered?

     My hematocrit is low as well. At 28.3, I am just 0.3 higher than the value required for a blood transfusion. My nurse tells me I may receive one at the end of the night.
     Sheesh! You'd think I have something wrong with me, or something. Blood Transfusion? Bah, I'd be fine without one. Well, maybe not... ::visions self when hemoglobin is at 6:: Maybe it's best to prevent that.

[2:40pm]
     Earlier, they performed the following procedures:
     1: Drew blood from catheter
     2: Hooked catheter to saline IV pump

     Now, my nurse comes in with the pre-meds (with 30 mins. to chemo), and she notices that there is no blood return with the catheter. She tries and tries... no blood return. Now she's sending for someone else to check.
     I hope they do not have to perform surgery again, and delay chemo further. Chemo: So close, yet so far away. ::worry::

[4:37pm]
     Nurse came by and tried again to no avail. Then she tried this thing called TPA that is supposed to remove any blod clots or anything. 30 minutes later...still nothing. Now she's getting a doctor. ::more worry::

[4:53pm]
     Nurse just came in and told me that she was going to administer the chemo peripherally; I'm going to get stuck by a needle. Stupid catheter. All this work to clean it and maintain it for nothing. She's scheduling an appointment with radiology surgeons to fix it... says it will probably be non-surgical.
     But still: More appointments, more procedures, more stress. At least I'm getting chemo. But now I have to stress about getting this catheter in order so that apheresis isn't delayed. Also, what about the neupogen? I've got to get that by tomorrow, but I don't even know if Walgreens has it yet.

::stress::

[10:57pm]
     Chemo is done and I feel great! No nausea or anything. The dose was 8.5g -- a little less than I expected, but still good. My new nurse got the catheter working after asking me to cough a few times. It looks like my catheter will be difficult for the next few months. *sigh* Oh well, at least I got my IV needle out.

Nite!

[9-21-08] 30 Rock

2008-09-21T20:44:00.000-07:00

[8:45pm]
     I've got nothing. For the past two days, nothing special has happened and I have done nothing productive (besides a little cleaning). Aren't I cool?

     I've been spending my time watching 30 Rock and reading a book. Finally, I've gotten into a book! It's hard for me to get started on a new series, but once I do, I usually tear through them. And that's that!

     Oh, and the nurse who said to replace the catheter dressing once a week was crazy! I mean, you're wearing this 24 hours a day; I think it's got to be replaced at *least* twice a week. But maybe that's just me: I like being clean.

     Tomorrow I get my chest x-ray at 8am (means getting up at 5:30am)... I'm hoping for an x-ray without problems. Hopefully, I will begin chemo tomorrow! (Yes, I will begin chemo tomorrow while being filled with hope. So :P) Fingers Crossed!

[9-19-08] Night Cough = Delayed Chemo?

2008-09-19T22:52:00.000-07:00

[10:53pm]
     This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
     With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.

     Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.

     Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
     Bah.

     As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
     Well, at least I'm getting used to it.

[9-18-08] Hickman Catheter Placement #2

2008-09-18T11:29:00.000-07:00

[11:29am]
     It was quite a different experience to have a procedure done in a teaching hospital. Still, it wasn't like what you'd expect to see in an episode of "Scrubs" or "House." There weren't a bunch of bumbling interns, and residents too busy dating one another to worry about the patients. It was actually quite serious there.
     However, that doesn't mean that everything went perfectly. My nurse had trouble putting the IV into my right hand, so she asked for help. It was quite disconcerting to have another nurse demonstrate the proper method while I sit there quietly. At one point, it went something like this: "Feel this vein? Like this. Still don't? Ok, try this. Here, feel right here. No? Ok, well you can at least see it, right?" Quite disconcerting.
     Then there is the surgery itself. After having myriad medical procedures performed on myself, I believe that I am somewhat capable of evaluating them. Let me say this: Stanford may be the world's best place to be for a lymphoma BMT, but consider getting your catheter placed elsewhere. Okay, that's not a totally fair assessment. First, it looks like the catheter was placed just fine. Second, I can't judge an institution based on a single doctor.
     My problem was that the procedure itself was painful. I had to constantly nag the doctor that what he was doing was painful. At first, he was receptive, but eventually I got the impression that he started to find my complaints annoying. Either that, or he believed that there was no possible way I could be feeling any pain with the amount of Fentanyl that he had administered; that I may have been faking pain to get more pain medication or something.

     A couple of things he said before the procedure:
     1: The only pain you will feel is from the lidocaine injections (local anesthetic).
     2: You'll probably forget the whole thing.

     Both were terribly wrong... I remember the whole procedure. I really think they didn't expect me to. At one point, I heard the doctor complain that my vein was being "stubborn." At another point, after I had complained, I recall the doctor telling the nurse to give me "the rest of the Versed", and that they "might as well not waste it." I'm not quite sure what this means (I had a blue sheet blocking my vision), but perhaps I am allocated a fixed amount of medication for a procedure? As far as I know, Versed is what makes you forget the procedure -- the Fentanyl is for pain. Anyhow, it's over now. Still, my point is that I remember my other two procedures (one, a port placement) with conscious sedation -- I hardly felt any pain at all. So why the pain this time?

     After the procedure, Barbara and I headed to the ENT appointment. She stuck this long tube with a camera attached to it... through my nose and down my throat. I loved how, before the procedure, she commented, "You've been subjected to so much, that this'll be a piece of cake for you." She was right; it was.
     Anyhow, she concluded that I was fine. So, good news there.

     The bad news is that, due to my cough, everything in my BMT schedule has been delayed a week. I should be enjoying a Cytoxan martini right now, but that's been delayed until Monday... which causes a delay in everything else by a full week. So, no outpatient conditioning chemo until Oct. 21st.

     Oh well. I've got a busy schedule! I'm just about to head to an appointment with a local oncologist (so that I can get labs in Santa Cruz). But first, I have to figure out how to work this darn catheter. I want a shower!

[9-17-08] Hickman Catheter Placement

2008-09-17T18:13:00.000-07:00

[6:13pm]
I just got back from my Hickman catheter placement -- what a long day! Everything has gone pretty well; all tubes have been upgraded successfully. Also, the ENT doctor says everything is fine. But I'm totally exhausted now (we got up at 3:40am), so I'll write more later. Now is time for sleep.

[9-16-08] Pleural Effusion

2008-09-16T11:07:00.000-07:00

[11:07am]
     My doctor from Stanford just called... I've learned that a direct call from a doctor is never a good thing. At least, not with cancer. My chest x-ray indicated a fluid build-up around my left lung -- a pleural effusion. This fluid build-up is especially vulnerable to infection, which is exactly what my doctor believed has happened. From what I gather, with an effusion, the fact that I start coughing whenever I lie down means that infection is quite likely.

     My doctor wants to start me on 5-day antibiotics. This means delaying the chemo. Hopefully, Cytoxan will begin early next week. Hopefully, this wont effect my BMT schedule too adversely. Hopefully, I will learn to use the word "hopefully" correctly.

     See, technically, my first comment means: "Cytoxan will begin early next week with a hopeful demeanor." Or, "I will learn to use the word 'hopefully' with a hopeful demeanor." What everyone is used to is actually incorrect usage. But, oh well, everyone does it -- that mean it is OK in the English language.

     Sorry, my mind wanders when I am upset. Oh well, at least the treatment should get me a good night's sleep. That would be great.

[9-15-08] My First Labs at Stanford

2008-09-15T23:59:00.000-07:00

[11:57pm]
It has been a long day. I think that's how things are when it comes to these Stanford visits. Let's see... what did I expect? I wrote:

(9:30) To the ITA for labs, cxr, ekg. (11am) To Clinic E to
meet with Doctor. (2:00pm) To the ITA for catheter and self-injection class.

Arrival at Stanford: The Infusion Room

     In case you are wondering, ITA stands for "Infusion Treatment Area." I believe that's where I'll get my outpatient infusions, but, for today, that is where I will have my labs drawn. In addition to that, I'll have an EKG and a chest x-ray performed.

     After my name was called, I left the waiting room and had my identity verified by the nurse.
     "Would you like a bed or a chair?", she asked.
     I was kind-of taken aback. A bed... for labs?!? Sit me on a milk crate, or whatever -- labs only take 10 minutes or so! But I wasn't about to be taken by surprise... I didn't get much sleep last night and if I had to wait long, I would rather take a bed a catch some z's. "Well, how long will this all take?"
     "Oh, you're just getting labs. It wont be long."
     So I ask for a chair and get taken into the infusion area.

     It's not like at the cancer center in Berkeley. Instead of individual rooms, there are about 8 comfy recliners facing the center of the rooms. There are a lot of people wearing HEPA masks in here. We take a seat, and wait.
     I play my DS, and wait, and wait, and wait. Almost two hours have passed and I still haven't seen my nurse! Barbara and I leave the infusion area, but I decide to inform as nurse anyways. Basically, I said, "I was supposed to get labs drawn at 9:30am (time was 11:20am), but I'm already late for the oncology appointment and I haven't even been seen yet. We've got to go." The nurse told us to wait a few more minutes, and made a few calls. Meanwhile, Barbara scrambled to the downstairs clinic to ensure that all appointments would not be lost due to a labwork delay.
     The guy sitting next to me was a doctor. He was calling his patients, informing them that he would make appointments as-planned. I thought it was kinda trippy for a doctor to be sitting here with me, as a patient. Maybe that is silly, but still... kinda trippy.

The Oncology Appointment

     The meeting with my doctor was pretty straightforward. First, she reviewed my latest Pet/CT scan. "Your scan was fine," she said. In addition, she noted that certain parts of the scan seemed to indicate that there was still some chemo activity. Meaning that certain parts of the scan were "brighter" because the chemo was still working while the scan was being performed. This means that my results are likely better than indicated.
     Barbara asked if it was possible that my third ICE treatment got rid of all the cancer. "Sure," she said.
     thinking about ICE, I inquired about the possible 4th ICE treatment. Apparently, my local oncologist misheard -- after my second scan, she never planned a 4th.

     Next, she inquired about my health. So I told her all about the coughing and the throat (better, now) and whatnot. The throat soreness didn't phase her a bit, but the coughing, apparently, was cause for concern. If there was a viral infection, this could mean a delay in the treatment. A delay is no good. Still, she has to know... so she ordered a "nasal swab."
     Later, when the scheduling nurse arrived, she systematically laid out the tools to perform the swab. She said, in her bone-marrow-biopsy-tone, "*sigh* As you know, I have to perform a nasal swap. It's a bit uncomfortable." At this point, I'm imagining her sticking a corkscrew up my nose... my mind is trying to imaging biopsy-level pain in the nasal region... not good.
     Still, maybe I'm over-reacting. Hey! I've never had one of these done before! If a procedure is bad, then the nurses under-report the amount of pain. Otherwise, it's just-the-facts. Realizing this, I start to feel better. I even tell the nurse, "Hey, I haven't had one of these before. That means I have no idea what it's like... For all I know, the swab is fun!"
     She looks at me for a moment. "I'm just so excited to give you this nasal swab", she says. "I can't wait!"

     The "nasal swab" was a piece of cake -- just made me sneeze a bit. Probably something like snorting pepper. Anyhow, after the procedure, I say, "I wish I had three nostrils!"
     "It's ok, I could just do it all again if you like."
     Sensing the attack on my established delusion, I offer up one final attack: "Oh, I wouldn't want you to have to go through all the trouble of getting new tools. I'm happy as-is."
     She nods... Victory!!! :P

     She then talked a bit about Cytoxan, and how I needed to drink 3 liters of water when I was not in the hospital. She asked me whether I was good at drinking that amount of fluid, I said "Yes, when I need to."
     Then Barbara said, "But not beer, of course."

*sigh*

     I then get a quick lecture on alcohol. Bah. What was cool was that she said, "I've couldn't possibly imagine anyone even remotely wanting alcohol after Cytoxan!" O RLY? Is that a challenge? :P Just kidding.. I promised to drink no beer once BMT was underway.

     Then, she hands us a whole heap of prescription orders and we run to the cafeteria for a quick bite to eat.

Catheter Maintenance and Self-Injection Class

     Drives me nuts how they call this a class. They should call it a tutorial. Classes have students, plural. Bah. I even asked the nurse; they only give about 5 of these "classes" a week. I'll bet ya that they all had only one cancer patient attending.
     ok.... let's try that again...

Catheter Maintenance and Self-Injection Tutorial

     That's better.

     So it starts with a video. I secretly wish to myself to see Troy Maclure (Simpsons) introducing "So, you've got a new catheter." It looks like a lot of work. And I can't go swimming, or have showers (without taping a bag over the catheter) -- I love showers! Bah. Oh well.
     Then the nurse brings out a bunch of materials. It looks like we're going to re-enact the tutorial. Great, I learn the best this way anyways. She brings out a rubber torso of a female with a catheter installed and says, "This is how it will look."

     I paused for a moment... "I certainly hope not!", I said. The nurse probably heard that a hundred times, but I couldn't resist. :P

     Then we're presented with a video and demonstration on self-injection. Kinda funny how the lady narrating the video looks totally stoned -- like she's "self-injected" quite a bit herself.

The Pharmacy

     We got tons of pills! Stanford wants Barbara to bring all my prescriptions to the hospital when I get discharged after Cytoxan. That's such a good idea!!! I remember getting out of my first ICE treatment, and having to scramble to get some Ativan. No chance of blowing chunks at the local pharmacy this time!
     Still waiting on the authorization for the Neupogen. Apparently, my prescription for Neupogen (for two weeks) costs about 15 grand. Ouch!

[9-14-08] The Infamous Chemo-Fart

2008-09-14T19:17:00.000-07:00

[7:10pm]
     For some reason, I haven't seen it on any list of side-effects. I haven't read about it online, or in other blogs... but I know it exists.
     There was this one blog... where a nurse conspicuously asked the blogger, "How are you farting?"

     I believe this is because the chemotherapy damages the gastrointestinal tract, causing some food to remain partially undigested. This causes excess gas.
     It is difficult to admit, but I have experienced this as well. In fact, I noticed it as soon as the second month of Stanford V. It's not just a few extra "toots" here and there... I'm talking cancel-a-date-so-I-can-go-home-and-fart-all-evening type fart. Holding it in can be quite uncomfortable... especially without reprieve for hours.
     Eventually, one afflicted with the dreaded Chemo-Fart learns to adjust. You may notice them "going to the bathroom" quite often, without flushing. Outside, they may occasionally walk quite a good distance from you, or even disappear for moments entirely. This is normal.

     Anyhow, the reason I bring this up is twofold:
       1> No one ever talks about it
       2> I'm about to begin BMT

     Basically, during the crummy parts of my inpatient stuff, I imagine I'm not going to relish the idea of unplugging the IV-Pole and hiding in the bathroom to fart. I'm probably going to be sick and miserable, and holding in farts isn't going to help me feel better. So, in the form of a public service announcement, Days -4 to 14 are "fart without guilt days."
     People visiting me are welcome to clothespin their nose (though chemo-farts seem to be with little odor), or I can issue a verbal warning, such as "pull my finger." :P

     Oh, boy. I mentioned this to Dan a while back, and he makes it a point of farting in myself and others, and saying something loud like, "Whoaaa! Those Chemo-Farts sure pack a wallop, Austin."

     *ahem*

     On another note, tomorrow starts the first day of Stanford BMT week! It begins with an appointment with my doctor!

[9-12-08] I Don't Have Cancer...

2008-09-12T16:57:00.000-07:00

[4:56pm]
     I'm sorry to admit, but this has all been a charade. I don't actually have cancer. All of this has been a drastic attempt for attention.
     Remember those visits to the cancer center? Well, I just walked in and snuck out the back when no one was with me. I watched a lot of movies at the theater during my so-called "Stanford V" regimen.
     I faked everything: the nausea, the hair loss, the fatigue, even the port-a-cath. It was all handled by some fancy make-up, good acting, and a lot of shaving.
     As for the surgeries and hospitalizations, the answer was good old-fashioned bribery. The nurses were acting all along. The scary-looking bags of chemo were actually saline. Lots and lots of saline -- that's all I got during my ICE treatments. The pills were all either acetaminophen or sugar.
     The surgeries? The surgeons were a bit more expensive to bribe, but they came around... and were happy to have a lighter workload. During my "procedure," the nurses and I usually sat around the surgical table playing Go-Fish until my time was up. Er.... ok, that's taking it a bit far.

Hmm...

     How about: Conspiracy Theory

     They're all in on it. The doctors, nurses, specialists... they're all in on it.
     The itching I've had over the past three years? A simple irritant added to my laundry detergent. What about occasionally being able to feel my "tumor?" Interesting how that began only after your invasive biopsy. Ever wonder why your surgical scar seems unnecessarily large? They installed some sort of surgical plastic during the procedure.
     Everything else can be explained by forging medical reports. How does one know that the x-ray or CT scan is really theirs? I'm not taking the pictures myself -- how do I *really* know?
     As for the chemo -- it did'nt actually contain chemotherapy agents. Instead, a small amount of nausea-producing chemicals are added to saline. Same thing for the hair loss, and other side-effects.

     So why would they do this?

     It's a type of generalized immunotherapy. An extremely small percentage of the population are immune to cancer. Well, not exactly -- they can still *get* cancer, but once they become aware of it, their body fights it off.
     Many attempts have been made to extract these cells and use them to create a cure. Unfortunately, once the cancer is present, the cells become polarized to that particular host and their type of cancer. The cells are ineffectual in another body. If a person with the right genetic make-up is found and they do not have cancer, then none of these cells are present.
     Somehow, these cells become activated only if the host truly believes that they have cancer. So, in order to create a cure, the researchers must find a person with the right genetics who also truly believes that they have cancer.
     Years of studies were conducted. In the traditional manner, participants in these studies signed consent forms indicating the nature of the experiments... in a nutshell, that they may be "lied to." Accordingly, when healthy participants were told that they had cancer, they were somewhat suspicious. As a result, no useful results were obtained. After years of these studies, the researchers involved concluded that there was no ethical way to find this cure.

     Hence, myself, and their non-ethical methods. But I'm on to them, I *know* I don't have cancer... which in a way, is sad. On one hand, I don't have cancer. On the other, I do have cancer (or at least think I do), but can be useful for cancer research.

     Ok, enough science fiction. Everything above this, in this post, is completely false. They are just daydreams... fantasies that swim across my consciousness when I'm dealing with something especially hard.
     It's amazing how far your mind will wander when you let it. :P

     As for reality... Last night was an absolutely terrible night. My nighttime cough, usually resolved by a few gulps of numbing mouthwash, would just not go away. So I just coughed for hours and hours and hours, occasionally drifting momentarily into slumber... to be harshly awakened my more coughing.
     The weird part is that I don't cough during the day. I'm not coughing now, but I coughed at a rate of about 1 per minute last night.
     Wherefore art thou enteroscopinologist? :P

[9-10-08] ENT

2008-09-10T15:05:00.000-07:00

[3:03pm]
     I always thought ENT stood for some really long and obscure medical speciality...like Enteroscopinology. I just figured it out: Ear, Nose, and Throat. Duh!

     Anyhow, my throat is still driving me crazy. The worst part is the coughing at night. For some reason (i.e. some deity playing a cruel prank on me), whenever I lie down to begin my blissful drift into slumber, I start coughing. It occurs because I lie down to go to sleep -- isn't that vicious?
     Another cruelty: my only cure to the coughing is the numbing mouthwash. I have to take two full gulps to start the cough. So what's the problem? That stuff makes me feel sick! It takes effort to hold down the two gulps. So I have the pain/coughing on one side, and nausea on the other. I have to choose the lesser of two evils. Sometimes the treatment is worse than the disease. :P Sometimes not.

     Yesterday, I promised to call the nurse if the problem persisted the next day. So I called her today. She studied my symptoms, discussed them with my doctor, and got back to me. The diagnosis: a referral to an ENT doctor is needed. She strongly wishes this to be resolved before I begin BMT chemo.
     So, I've been scrambling all day to make an appointment with an ENT doctor. It is very hard to schedule around the BMT schedule... especially if I need a ride from someone to do so. Bah.

[9-10-08] BMT Calendar

2008-09-10T10:14:00.000-07:00

[10:12am]
     Finally! My BMT calendar has been drafted! So, without further ado, here it is:

September
   15th: (9:30) To the ITA for labs, cxr, ekg. (11am) To Clinic E to meet with Doctor. (2:00pm) To the ITA for catheter and self-injection class.
   16th: (2:30pm) Teaching for transplant class (bring caregiver). ***Nothing to eat or drink after midnight.***
   17th: (?:??) Catheter placement.
   18th: (9:00am) To unit E1 overnight for Cytoxan. Admit
   19th: Discharge home with caregiver. Begin Neupogen and Antibiotics.
   20-23rd: Neupogen at home.
   24-28th: Neupogen at home. Visit Stanford daily for labs.
   29th: Apheresis. May take 1-5 days.

October
   10th: (2pm) To Clinic E for labs, cxr, ekg. (3pm) To Clinic to meet with Doctor.
   14th: (10:00am) Begin Continuous IV heparin. Administer Gemcitabine, Navelbine on outpatient basis.
   15th: My birthday!
   19th: (10:00am) 10:00 Administer Gemcitabine, Navelbine on outpatient basis.
   21st: (9:00am) Admit to BMT ward. Administer BCNU.
   23rd: VP-16
   25th: Cytoxan
   26th: Sister's due date.
   27th: Transplant!
   28th: Recover for next 2-3 weeks.

     That's it so far! The calendar is a bit sparse at places, but at least I know when everything is going down. Worrying about when everything is going to take place is the worst! So, even if it's not as aggressive as I'd like, at least I don't have to worry.

     Speaking of which, I was thinking about something. Sometimes, I think this whole BMT process is geared toward 80 year olds. All the precautions and "mandatory caregiver" stuff... seems a bit excessive at times. Sure, the infection guidelines I can agree with. But, I can certainly inject myself with Neupogen after a wee dose of Cytoxan, and I'd like to think I can maintain my catheter throughout. Also, their estimates for recovery times seem quite high. Makes me think their system isn't geared for the young.
     Then again, maybe I'm just weird. I do tolerate chemo pretty darn well.

     For example, when Dan and I were visiting one of the nurses at Stanford... Her role was to explain, again, just what was going to happen in the following months. At one point, the conversation went something like this:

   Nurse: "...and you'll have to wear the HEPA mask whenever you are outdoors. This is because of all the dust and dirt that you would kick up when you are outside. You should try to stay away from the dust."

   Dan: "What about concrete?"

   Nurse: "Yes, I would much rather Austin walk on a concrete path than a dirt path."

   Dan: "No, I mean concrete dust. Like the kind found in construction, when you're mixing 'crete."

   Nurse: **pause**

   Austin: "That should be okay, right? Because the bacteria found in natural dirt isn't in commercial products, right?"

   Nurse: **Looks at both of us really oddly**
     "Er, yes... I suppose that would be safe, but you shouldn't be breathing too much of this sort of dust..."

     I love that. I mean, here I am, 10 days after my third cycle of ICE and feeling great! Great enough, in fact, to have re-tiled a kitchen, installed a stove/oven, and installed a new sink. Chew on that, cancer. :P

*** PS: ***

     By the way... If you have a persistent cough and you have no cough syrup, why not use the numbing mouthwash instead? If your throat is tickling and causing you to cough, why not try to numb it with the mouthwash?
     One could easily lie down, pour in some mouthwash, and let it sit for a while at the bottom of your throat.
     Bad Idea. That is, unless you're ready to do laundry. You have a persistent cough, stupid. :P

Just a cautionary tale...

[9-08-08] Motocancer

2008-09-08T16:44:00.000-07:00

[4:42pm]
     We left for Stanford today at 8:20am... we just got back. That's almost 9 hours on the road! This time, Dan drew the short straw -- he was the unfortunate cancer courier for this trip to Stanford.
     It started with a plea to recover my motorcycle. For the past month or so, my motorcycle has been left abandoned in the city of Berkeley. Sometime last week, the permit expired, and I was constantly worried that the motorcycle would be towed... Additionally, without a motorcycle nearby, I am even more helpless without local transportation. Fortunately, Dan agreed to help me transport my motorcycle in his van (Thanks Dan!). [The reason I don't just ride the motorcycle from Berkeley to Santa Cruz is because a trip of that distance is very tiring. My family prefers that I be safe and avoid exerting myself too much while driving a motorcycle.]
     Since Monday was also the day of my Stanford appointment, Dan was recruited to take me there as well. Unfortunately, Stanford is hardly on the way to Berkeley...

     When we arrived, I was given the whole BMT spiel all over again. I re-learned about the risks, the difficulties, and the treatment details. Some new things I learned were about the long-term side effects. I always thought it was naive to assume that I would beat this cancer without some long-term battle damage... it appears that I was correct. Here's what I learned:
     1: I will be infertile. I thought this was more like, "there is a 25% chance you will remain fertile." But this nurse seems pretty certain of this.
     2: There is an 18%-20% chance of lung damage due to the Carmustine. It is possible to reverse this damage if caught quickly. I don't relish the thought of coughing the rest of my life.
     3: 10% chance of developing a secondary cancer.
     4: Unspecified chance of liver/kidney damage, since all these drugs work their way through the liver or kidneys.

     That's most of what I remember. Oh, and maybe they have to mention it or something... but it is somewhat disturbing to be repeatedly told about the possibility of hair loss due to a chemotherapy agent. Uhm... Hello? I know... I lost it all already.
Oh well.

     After that, she began talking about the particular clinical study I was to be a member of. In particular, I noted what she said about the study preceding (parent study?) mine. The previous study lacked two chemotherapy agents and had greater doses of Carmustine. She cited a 5 year remission rate of 50%. When I told her that my doctor expected around 80%, she seemed skeptical. I don't like that. However, perhaps that is because she lumped me in the same category as all Hodgkin's patients. Being stage IA Bulky has got to up the odds.

     Throughout the meeting, the nurse expressed her shock that I *still* had no "BMT calendar" drawn up. She called my scheduling nurse, and allowed me a quick visit with her.
     My scheduling nurse said that a calendar could not be drawn without me finishing certain preliminary tests. (Why haven't I taken had these tests scheduledearler? hmm?) Fortunately, I was given an opportunity to save lots of time: she could schedule me for my last test at 2pm (an echocardiogram), and have my calendar available for pickup then. I agreed, I had no choice... though it would be difficult.
     You see, the current time was 11:30am. The echocardiogram was at 2:00pm. That leaves 2.5 hours to drive to Berkeley (through San Francisco), by some lumber for a makeshift ramp for my motorcycle, load my motorcycle into the van, and return to Stanford. It was difficult. In the end, I arrived at my echo about 30 minutes late. And yes, the receptionists gave me a very hard time about it. I felt bad, but still, it was a victory.
     Well, not completely. After the echo, my scheduling nurse was too busy to create a calendar for me. Hopefully, I'll receive it via email this evening.

     So, that was my day.

     Also, unfortunately, I have more to add in the "side effects" department.
     My throat hurts when I swallow. At times, it hurts my throat even when I speak. At night, the irritation seems to cause me to cough a bunch. Accordingly, I'm gulping down the "lidocaine mouthwash" every four hours. It helps, but doesn't seem to get rid of it... Barbara believes I might have an ulcer of some type in my throat. This has got to be the second worst side effect so far (nausea, of course, being #1). I'll have to make an appointment if this doesn't get better soon.
     Additionally, most of my chest hairs have fallen out. The problem is, they also haven't stopped growing. So, I've got a bunch of red spots of ingrown hairs. eww. Sounds worse than it is though... like small bug bites.

     Kinda makes one think how bad it'll get... Should be interesting...

[9-07-08] Good to be Home

2008-09-07T14:49:00.000-07:00

[2:47pm]
     With my sister's cold long gone and my WBC rising, I have now been given permission to return to home base. It's a good feeling. I've really missed my family... and my desktop. :P

     Tomorrow is the second Stanford appointment! Starting at 10am, I sign the consent form and hopefully get things under way. They also requested my Pet/CT CD, which I took a peek at...

     I thought the CD would be full of weird and inaccessible medical mumbo jumbo, but it was quite user friendly. Just plug in the CD, then it installs the software and loads your personal profile. There are cross-sections of your body on the left, and a vertical 3d representation of yourself on the right. I'll post some images sometime later.
     Anyhow, the tumor *is* large. And by looking at the cross-sections on the left, I can see the high-activity parts of the tumor. Interesting to note, however, that some non-cancer regions of my body have about the same activity. Also interesting is that the tumor itself is cone-shaped, not solid. It looks kinda like a coffee mug, and the regions of activity are along the edges of the coffee-mug, not the center.

     Anyhow, I just got home. So I'm going to get more settled in. More later.

[9-05-08] Lithium

2008-09-05T15:13:00.000-07:00

[3:13pm]
     Good news! My doctor did perform cytogenetics on my bone marrow biopsy! That means that I do not have to be subjected to another! Also, Liz is going to pick up my Pet/CT CD, so I won't have to drive to Berkeley the day of my Stanford appointment! Thanks Liz!
     Ah, everything seems to be working out. It's a good feeling.
     Feeling a little better than yesterday too. :)

     You know, for some reason I've had that Nirvana song (Lithium) stuck in my head. Then I started thinking about 6th/7th grade... it's funny how Nirvana always does that. Around then, I had just moved to Kentucky from California, so everyone, for some reason, considered me "grunge" though I hadn't a clue what it actually meant. Nevertheless, I soon found myself occasionally wearing flannel and holding mixtapes of essential Nirvana songs.
     Then I started thinking about that kid that was me. I wonder what he would say about my current situation. If he would get angry and blame me, or break down and cry. I was such a kid, then.

     Just some thoughts...

[9-04-08] Nausea

2008-09-04T16:26:00.000-07:00

[4:27pm]
     I am located on the boat, sitting cross-legged, and stationed in front of the television. The Giants vs. Redskins game is on. My cell phone, a thermometer, my laptop, a bottle of Ativan, some food and drink, and an empty fed-ex bag are all within my reach. Why the fed-ex bag? It was the nearest disposable container I could find.

     In other words, this has been a very rough day for nausea... probably the worst. The kind of nausea where you gag and cough, have your mouth water, and grab the nearest container. Not fun. Anyhow, this is somewhat surprising to me -- you would think that the worst nausea would be during chemo, not afterwards. My theory is not that I am experiencing nausea directly from the chemo, instead, I am experiencing nausea due to the havoc that has been wrought to my gastrointestinal system. I hear chemo can due that. So, maybe, my stomach is so delicate right now, that it has difficulty holding anything.
     This also may explain another side-effect I've been having. I was thinking that I was having some of those common mouth-sores under my tongue due to chemo, so the doctors prescribed some of that numbing mouthwash. However, now that I think about it, the pain was more located in the throat than in the mouth. In addition, occasionally it would be quite painful to talk, drink fluids, or swallow. Maybe it's part of the same problem: chemo killing those sensitive gastrointestinal cells.

     Regardless of the cause, my only strategy is to take Ativan. I've also been trying to get something in my stomach (thinking that an empty stomach is contributing to my problem), but I can only eat a very small amount at a time. So that's where I'm at today. I'm sure the nausea will get better though -- it usually has it's bad moments, then goes away (especially with pill support).

     It's also a bummer to miss watching the first football game of the season alone. But I still got to keep from getting sick.

--------------------------------------

     There's been some developments on the Stanford front. Firstly, I may not need a BMT after all! The Stanford nurse has reported that I need the following tests:
     1: A pulmonary function test (which I just had)
     2: A Resting cardiac echo with doppler and estimated ejection fraction (which I'll need to get)
     3: A Bone marrow biopsy with aspirate and cytogenetics (if the biopsy done late July included cytogenetics then another does not need to be done)

     Please tell me the cytogenetics has been done!

     The other news is that I have an appointment at Stanford on Monday at 10am. So things are progressing! It's mainly an appointment to collect my consent and my latest Pet/CT results. Nothing too big, I think, but maybe it'll establish a schedule for the next treatments.
     The bummer is that I have to bring my latest Pet/CT CD, which means I have to drive to Berkeley and collect the CD in the morning, then drive to Stanford and deliver the CD. Cancer causes lots of driving!

[9-03-08] Post ICE Appointment

2008-09-03T12:06:00.000-07:00

[12:06pm]
     I just got back from my oncology appointment in Berkeley. All that traveling (we left at 5:30am) has left me utterly exhausted! It appears I've become as pathetic, perhaps more, than the worst part of Stanford V. Last I checked, my hemoglobin was at 10.5; the worst during Stanford V was 10.1. However, my pulse today was an incredible 127! From what Barbara tells me, this is because my blood is delivering less oxygen per cell, so the heart has to pump faster. Still, under Stanford V, my pulse was never this high. Therefore, I conclude that my hemoglobin is under 10.1, and I am now at an all time low. Woohoo!
     I vow to not move more than 100 feet in the next day. :P That's how tired I am.

     Then there's the nausea, which is still quite annoying. For the first time, smells and tastes trigger it. I find I am very picky what foods I eat, which is strange because I can simultaneously be hungry and want to eat nothing at the same time. One morning, I nearly lost my stomach because the water tasted weird... though, the nausea is always worst in the morning.
     But 1 ativan every four hours (two in emergency) always seems to do the trick.

     As for the appointment itself, it was mostly good news.
First off, my doctor was extremely amazed at how well I handled the three sessions of ICE. Maybe they say that to all the patients, but the compliment felt nice, and I do think I have a resilience to the stuff.
     Anyhow, my doctor talked with the Stanford doctor, and they are communicating! He seems to be under the impression that the Stanford doctor wanted a 4th ICE, but I think that's just up in the air in the moment. The important thing, is that they set up a referral appointment. During this appointment, I believe that I will be administered Cytoxan, and have apheresis performed within a few days. The only question: how soon can I get this appointment?

     Additionally, my doctor seemed to indicate something quite distressing, and referred to it as a "holding pattern." Let's say that you're on your third ICE and apheresis has been performed, but the Stanford BMT rooms are currently booked. They may just give you a 4th ICE to keep the cancer in check as they wait for another room to open up. If a room was open in the first place, then no 4th ICE, and proceed to BMT. This is disturbing. I like cancer treatments to have a strategic purpose, not an administrative one.

     The other distressing news was delivered in a scripted manner. Remember when the Stanford nurse was telling me about all the new tests that would need to be accomplished? "First the Muga, that's easy... then the Pet/CT, that's easy... then the Bone Marrow Biopsy, that's hard." Well, my doctor said pretty much the same thing verbatim. They know you're terrified about this, and perhaps they all go to the same seminar on how to deliver the bad news. I swear, my physician delivered the news that I had cancer far more directly and bluntly than the news that I need a bone marrow biopsy.
     We told him that we weren't going to do it without sedation of some kind. I asked him if there was a way he could perform the procedure in a "humane" way. He looked a little flustered and apologetic at this. Perhaps I should have worded that differently. "We used to provide some sort of sedation for the procedure," he said, "but the new FDA regulations are unreasonable regarding the amount of equipment and manpower for a conscious sedation bone marrow biopsy." [Damn the FDA]
     We told him that we would seek out other places that would perform this procedure. He said that there were places that would do this, but also warned that "Stanford may want to do things their way." It's funny, the threat of a bone marrow biopsy this time around did not illicit the emotional response of last time. Knowing that I would be sedated, or something, at all costs, gave me the comfort I needed. Even if I have to go to downtown Oakland for heroin before my biopsy...ok, maybe not that far...but you get my point!

     It's good to have my normal oncologist back from vacation. He went to Ecuador. So I asked him, "I'm dying to know -- did you go to Galapagos?" He looked genuinely pleased that I asked, and then told me that he did not. That's like going to Egypt without visiting the pyramids! Oh well.

[9-02-08] Complaining

2008-09-02T12:34:00.000-07:00

[12:35pm]
     Two are two people admitted for the same thing in the same hospital: both have accidentally cut off a finger and are bleeding profusely.

     The first man screams to the triage nurse, "Ohmygod ohmygod, it HURTS SOOOOO MUCH!!! The PaiN, the aGoNy!!!!. Why me? Why does this have to happen to me??"

     The second man calmly approaches the triage nurse, "I seem to have cut off my finger. It is extremely painful."

     For both patients, the nurse jots down: "Patient complained of pain due to finger loss."
     It seems that complaining, in a medical sense, simply means reporting something negative or distressing. With that in mind, I would like to do some complaining.

     So...

     I didn't really write all of what I thought...Why was I so upset yesterday?
     1:I was homesick. After being away from home for so long, I began to miss all of those wonderful things associated with home.
     2:I missed my family, and wanted to tell them what was new in my life, and to find out what was new in theirs. Also, I wanted to see my nieces.
     3:I was extremely tired from the trip, and just wanted to lie down. In addition, I was craving my own bed for days now.
     4:It's cancer, exerting yet more control on my life.

     Ok, now why was I so upset to stay on the boat? First off, I'd like to say that Barbara has been great: she sat me in a comfy corner, did my laundry, purchased food, fed me, and kept me entertained as she cleared room for me to live in. All I had to do was play my little DS until everything was ready.
     So, as with every small yacht, there are some things which are more difficult. For example, very quick showers and a pump toilet. And for the person with low hemoglobin, it takes a great deal of effort to make it from the forward berth (bed) to the aft toilet. This trip may happen quite often. It's also Barbara's office, so the small area is quite full of stuff. Anyhow, I'll leave out the rest. Nevertheless, it's not optimal for neutropenic cancer patients.

     Ok, enough complaining -- now for some good news! It looks like I wont have another ICE treatment! I sent the following letter to my Stanford Doctor:

Since I have not yet heard from Stanford, I thought I would post my current situation regarding my treatment. Perhaps this will help solidify a schedule for my transfer into Stanford care.

The latest Pet/CT scan, taken 13 days after ICE cycle #2 shows a partial response to the treatment so far. Tumor size has reduced about 10%, and the metabolism has decreased 60% (from a 5 to a 2).
My doctor considers this very good news.
Accordingly, he has scheduled two more cycles of ICE. When I asked him about apheresis, he said that he will do what Stanford recommends. Unfortunately, it seems he has not contacted you all yet -- he said that he would try sometime next week

Apheresis is a big concern right now because, as I understand it, it is possible to expedite the collection of stem cells by combining ICE with G-CSF or some such. I am aware that Cytoxan mobilization is probably the current choice, but it looks like that introduces more delay, and I would like to try my hardest to begin treatment as soon as possible.
If at all possible, would you be willing to coordinate with myself or my doctors to help make it so that I begin outpatient chemo at Stanford as soon as possible? Perhaps starting with apheresis?

Please let me if there is anything else you would like to know. Also, please let me know what you think, or if you could outline a possible schedule for treatment.

Thank you,
- Austin

I got back the following reply:

I have not heard from Dr. Irwin yet so thank you for the update. With some residual disease present after the 2nd ICE, I agree with proceeding to the 3rd ICE- It is my plan to give you cyclophosphamide after this cycle 3 and collect the stem cells off of the cyclophosphamide. A fourth ICE is likely not necessary with your disease responding and our plan to go forward with transplant (keeps the toxicity down).

Zoe should be back in the office after the holiday and will get your calendar set up. There has been no lost time and everything is moving forward smoothly, so not to worry. Thanks again for the message.

So... awesome! I could be getting the transplant sooner than I thought! Oh, and I have an appointment with my oncologist tomorrow morning! So things are moving smoothly!

[9-02-08] Isolation

2008-09-02T00:12:00.000-07:00

[12:13am]
     It's been a long day. So I'll keep this brief, before I fall into slumber.

     Yesterday, Liz and I spent a lovely day looking at a new house for rent. This particular place probably wont work out, but it was fun nonetheless. We also spent a good deal of time trying to get me fed -- which is quite harder than it looks when you are limited to restaurants which serve fully cooked food to patrons outdoors.
     It's all due to the neutropenia thing. I can't eat uncooked vegetables or anything for that matter: microbes and whatnot. Also, I can't be in crowded places without a hepa-mask on: people with their colds, and whatnot. So, if we want to eat out, we have to eat outdoors. After waiting about an hour for a seat outdoors, we decided to bail and get some take-out.

(Get This: While looking for alternative food options we found a "taqueria" that did not serve burritos! In fact, the lady got a little snippy when I asked for one. Sheesh, no need to get mad at me just because you work in a pseudo-taqueria. Am I wrong?)

     Anyhow, I wake up today (Monday), and Liz drops me off at the bart (transit) station. Dutifully, I don my blue hepa-mask and confirm to the world that I am a cancer-infested chemo-eater. It's not a garment to be proud of. I'm sitting there in a train with two signs: on the left, there is a sign for breast cancer awareness; on the right, there is a sign for a leukemia and lymphoma marathon. Then there is these normal people sitting there casually, noting me, and noting the two cancer signs behind me. I can see them feeling the plague upon them, and not wanting to acknowledge it. For you see, I am sick. And society does not like sick people.

     But the topic for today is isolation. I need to protect myself from a cold or something because my immune system is so weak. Accordingly, I need to avoid the deadly germ -- to avoid anything which may propagate or spread this evil menace. So, I can't go home.

     Unfortunately, my sister and her daughters seem to have caught a bit of a cold at the herbal symposium this weekend. So, after a long day of traveling, I have to establish a new home-base on the boat to the south...and it is a messy boat too :P Still, I was really, really, really, tired at that point. I wanted nothing more than to just lie down. So, before I can lie down, I've got to get situated. Thankfully, Barbara is getting everything arranged while I casually play my Nintendo DS -- otherwise it'd be all too much.

     So, writing really helps me vent... but I feel it necessary to point out that I was really quite pissed off about all this. Not at any thing, and especially not toward any person, except... this damn cancer. I just don't like it. It sucks.

     But, as I said, writing helps. I'm good now. I'm going to go make some nachos and then go to sleep. Cancer still sucks, but at least I can still gorge myself on nachos. Goodnight.

[8-31-08] Discharge!

2008-08-31T10:15:00.000-07:00

[10:15am]
     Yay! I get to leave my room today! Hopefully around 12:00pm. Of course, they are insisting that I wear a mask, as my neutropenic score is 280!
     That means that my WBC is 1.0, and Neutrophils at 28%.

     I don't look forward to walking around with a mask. Bah. They're also planning on hooking me up with some more of that bone-pain-inducing Neupogen so that I get those counts up and return safely in two weeks. I've got to push forward!

     Hemoglobin is still slipping at 10.5! Approaching that devastating 10. All this is like a race-track! I mean, sure, it's my life and everything, but who says you can't have a little fun playing the numbers?
     If I sit around all day, hoping the numbers will get higher, I will surely find myself repeatedly disappointed. If I embrace the inevitable, then I can have a little fun with it. Look at falling numbers as a challenge, not a curse. Low numbers? Fine, a chance to test my mettle. Let's see how these numbers duke it out with the fabled sword of Neutroscalibur!
     Ok, before I get too deep in the realm of silly. Allow me to make my point:
     1: Things will suck.
     2: Often, there is very little you can do about #1.
     3: So just embrace it: make it a game, look forward to it, whatever it takes to make #1 not get you down. Because...
     4: When it all comes down to it, and you've done everything you can, everything else is up to chance. So go with it.

Just a bit of my twisted philosophy.

[8-30-08] ICE, day 4

2008-08-30T11:33:00.000-07:00

[11:33am]
     Finally! The final day of ICE! Of course, I just found out that they are starting it at 8:00pm. We started around 5 yesterday, so I was hoping to keep moving the chemo up in time... guess I got my hopes up.
     Anyhow, I got to meet Dr. Wexler today, so I asked her about the mysterious "maximum dose" of Ifosfamide question. Her response was that Dr. Irwin probably wrote out the first order, and Dr. Cecchi wrote the second. She continued that Dr. Irwin probably was working off of some maximum dosage per body weight, while Dr. Cecchi was using the standard surface area. Nevertheless, I don't like dose reductions. It's good I'm getting the full dose now.

     It feels like my appetite is coming back... maybe it was a rough third day. I anticipate not having to beg for as much Ativan today :P Nevertheless, I am quite tired -- I think I'll go back to sleep and sleep the day away.

[7:54pm]
     I did spend most of the day sleeping. That is, until my back started hurting. So I asked for some Vicodin and slept some more :P It was a good strategy.

     Still, the parts of my day where I was awake was quite uneventful... In other words, boooorrrinnng.
I did manage to start playing Final Fantasy IV on the DS -- TJ may have been right to recommend this. A fresh spin on a classic game.

     Today I checked the neutrophil and WBC counts and did the formula outlined in the previous post. Although my WBC went up by 0.2, my neutrophils dropped my 20% -- so my new Neutropenia number is 588. Going down...
Once I get under 500, I'm in the major leagues :P

[8-29-09] ICE, day 3

2008-08-29T08:31:00.000-07:00

[8:32am]
     Finally, I get to have meals that I've ordered on their little menu! I ordered scrambled eggs, with bagels, and a special request for bacon. They gave me pancakes instead of eggs. For anyone who knows me, they will know two things: 1> I loathe pancakes, and 2> My entire breakfast-eating system has effectively been shut down. The egg is a catalyst between the bread and the bacon... a necessary conduit, if you will. My only option: eat the bacon straight and be a little hungry (which is actually OK, because my appetite is waning a bit anyways). I find it remarkable how much I talk about food in this blog...

[10:33am]
     Lab work is in! The results are:
   WBC (White Blood Count): 1.2 (Normal 4.8 to 10.8)
   RBC (Red Blood Count): 3.5 (Normal 4.7 to 6.1)
   Hemoglobin: 10.7 (Normal 14 to 18)
   Neutrophils: 63 (Normal 35 to 75)

     I included neutrophils becuase I recently learned something called a "neutropenia score." If you are below 1000 in this score, you're neutropenic and immunosupressed.

Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
Severe neutropenia (ANC < 500) — severe risk of infection.

The formula is: (Neutrophils/100) * (WBC*1000) = Neutropenia Score
So, I am: (63/100) * (1.2*1000) = .63*1200 = 756.

     This means I have moderate neutropenia. With a WBC of 1.2, this would normally be severe, but my neutrophils are hanging in there at the moment (within normal range!).

     As for the hemoglobin. I feel pretty ok right now, but I know from experience that once that number hits 10 or below, then things break down.

     In the realm of side-effects, nausea has been more consistent with this cycle. I've asked for ativan so much, I think they're just giving it to me every four hours now. Works for me! Now the nausea hasn't shown up at all. However, food still doesn't seems appetizing. It may be time to take on the approach taught by Liz's mom: chicken noodle soup and popsicles!

     As for everything else, I am doing well. Just sitting around playing "Final Fantasy XII: Revenant Wings" on my DS -- it's quite addictive.

Hopefully, I'll get chemo earlier today. I want to be able to go apartment hunting with Liz on Sunday.

[6:03pm]
     Woohoo! Chemo has just started with the Cisplatin! So it looks like I'll get out of here in-time. That's good news. Interestingly, I noticed that my dose for ifosfamide was increased from 1750mg to 2200mg. That's quite a big difference if you consider that I've been getting 195mg of Cisplatin. If you've read only of my earlier posts, you'll notice this discrepancy...
     The maximum dose for Ifosfamide is 1000mg/m^2. My surface area is 2.2m^2, thus I should achieve 2200mg of Ifosfamide. When I questioned the nurses as to why I was receiving 1750mg, they speculated about maximum dose in such a short time (such as 7000mg). I am skeptical... why, then, am I now able to have 8800mg in four days??
     Either: 1: Someone screwed up.
     or: 2: They acknowledged my tolerance and decided I could handle a higher dose.
     or: 3: They planned to gradually up the dose all along.

     I just hope it's not #1. Or maybe Irwin's orders differed from Cecchi's. Who knows? When I looked at the chart, I saw 1750mg crossed out and replaced with 2200mg. Consider what might have happened if I had 2200mg all along? Remember that dose reduction study. Please be #2 or #3, and let all be right in the world.

     This also explains why this round of chemo is rougher than the last two -- I'm getting almost 20% more chemo (by volume).

[8-28-08] ICE Cycle 3, day 2

2008-08-28T11:06:00.000-07:00

[12:10pm]
     Well, time flies when you're diagnosing computer problems. In an attempt to boost my gaming situation here at the hospital, I acquired an HD (with component video) to usb device. This was so that I could hook up my xbox 360 to my laptop.
     After hours and hours of work, I actually managed to get it to work on my system (apparently it fails in xp sp3), but I managed to hack around that. To my dismay, the video quality was poor and laggy. Impossible to play games with. After further research, I discovered that it is currently impossible to do what I was trying to do -- no product is available (in HD).
     Oh well, I guess I've got to bring my lcd screen to Stanford. In trying to minimize my situation, I made things terribly complicated. No xbox on lappy.

     And that's been my day so far. No chemo yet -- they plan to start around 2pm, so maybe I'll get some chemo before midnight this time. I'm just a tad frustrated...

     So my white blood count is at 1.6, and my nurse told me to wash my hands more, and wear a protective mask around the hospital and whatnot. I've never had it before, but it sure explains the soreness around my throat -- annoyingly painful! Just to illustrate the way things have been going around here, I asked for some of that mouthwash at 11, and received it at 8:30pm. The order for chemo was processed by 12, and I started receiving hydration for that around 9:30pm, then the chemo two hours later. Calm down Austin, it will get better.
     They have a bunch of "traveling nurses" that move from one hospital to the next. Apparently, the chemo certification is out of style. That was the cause of my delay -- no chemo nurses available. As for the mouthwash, I chalk it down to inefficiency or negligence. And they actually *expect* you to turn in all your own prescriptions that your brought?!?! Ha! My Vicodin is well stashed away -- if I get some severe pain, I don't want to wait 8 hours to get relief!

     My hemoglobin is slowly descending -- right now it is at 11. That explains why I still have some energy -- I know from experience that I turn into a anemic sloth at around a hemoglobin level of 10.

[12:55pm]
     Lunch is right on time, five till one. I guess it makes since. Since most cancer patients probably abhor food right now, it benefits everyone else to serve us last. Then you've got the young buck with Hodgkin's to screw everything up.

     Headache, headache, headache... This is the fourth day in a row that I've had to deal with an annoying headache. If I didn't know any better, I would say that I'm stressed! But that's just not true. I should be, but I'm not. Anyhow, maybe if I score some coffee things will get better. Apparently, it dilates the blood vessels on your head or something.

[2:14pm]
     On the topic of "magic mouthwash." Let it be known that I feel apprehension in describing a perfectly proven form of Western medicine in a manner fit for mystical treatment. Every time I say, "Please, could you get me some of that numbing mouthwash?" The nurse says, "Oh, the magic mouthwash. Sure thing." I've tried several times. Sometimes they get confused if I describe it in any other term.
     Accordingly, I have been forced to relent. Still, a bit of my soul is chipped away each time I say the term "magic."

     On another note, the big boss (oncology manager) came to visit me to ask me if I was being cared for properly. Mwa ha ha I got to relate my horror story about waiting 8 hours for relief medication, and 9 hours for chemo. It felt good.

     I also wanted to say a few words about my internet friend Bekah. She just completed a bone marrow transplant, and found out a few days ago that the treatment has failed. The remaining options are not as promising. That sucks. In a way, I feel like we're peers; I kinda look up to her. I hope for the best.

[8-27-08] ICE again, naturally

2008-08-27T13:57:00.000-07:00

[1:58pm]
     I need FOOD! On the hospital patient guide, it specifies that lunch is to promptly arrive between 11:00am and 1:00pm. Around here, in the oncology department, that usually means that we get lunch at 1:00pm. I'm used to that, so I've been patiently waiting... To my horror, I just learned that I've been forgotten! Even worse, they are prohibiting me from walking to the cafeteria!
     Fortunately, I've bribed one of the guards -- she's going to try to smuggle something in.

     Onto less important stuff...

     I haven't really elaborated how I feel regarding my scan results. Truthfully, I am pleased with the results. Not ecstatic; not depressed... pleased.
     Apparently, this sort of casual attitude really annoys oncologists. It makes sense: they have to deliver so much bad news to so many people; any chance to deliver good news is a prized opportunity. It's a bit of a buzzkill if the patient already expects and calmly acknowledges the good news. Oh well -- I can't help that.
     But basically, I got exactly what I expected. Actually, not exactly. I expected the tumor to shrink, say, 35%. Not enough to head straight for Stanford, but enough to justify a BMT and continue ICE treatment. Technically, my results were substantially better than that. Even though the tumor only decreased in size by about ten percent, its metabolism went from a 5 to a 2. So I really have a 60% reduction. Call me old fashioned, but I want the thing to shrink a bunch too.
     Regardless, I can now go to Stanford (yay!), and I will get 2 more ICE sessions. Now that I think about it -- I am relieved. If the ICE did nothing, I would be in a very bad situation. But now, I can start making long-term plans again. So... good.

     but... I was just now starting to recover from the last ICE treatment! I mean, it wasn't all that harsh, but there were certain disadvantages... My stomach has just returned to me a few days ago: I can eat *anything* again! And, with regard to the opposite of eating, things have returned to nominal (mostly) functionality! It's one of those things that you don't miss until you lose it. Let me tell you, I can truly appreciate it right now.
     Now, I get to go back to the hospital and lose all that yet again. That sucks! Bah.
     Maybe this time, the ICE will put up more of a fight. In a way, I want my opponent to be more of a challenge. Like a ten year old beating up a heavyweight boxer... I'm kind of embarrassed for him. Let him get in a few punches just to keep up appearances...this is too easy.

     Anyhow, I forgot my notebook charger!! How could I do that?!?! I'm a nerd for crying out loud! That's like forgetting to put on pants in the morning! So, my battery has a few minutes left. So, ta ta for now.

[8-26-08] Scan Results!

2008-08-26T20:13:00.000-07:00

[8:12pm]
     Sorry about the late post -- we just now returned from Berkeley. It's a 1.5 hour drive, but we stopped at several places to go shopping. It was nice to treat myself further :P

     Anyhow, onto the results! The doctor seemed to think that the scan results were quite good. The tumor size itself decreased by about 10%, but what really matters -- apparently -- is the metabolism, which decreased from a 5 to a 2.
     This more than justifies that I am responsive to ICE, and thus makes me eligible for a BMT! Woohoo! Anyhow, the plan is to try two more ICE treatments. Also, we need to further coordinate with Stanford to make sure the apheresis goes well.

     Ok, gotta celebrate my last day of freedom -- headed back to the hospital for more ICE tomorrow. I'll post much more tomorrow.

[8-25-08] Pet-CT Scan

2008-08-25T13:46:00.000-07:00

[1:44pm]
     I just returned from my third Pet-CT scan! I'll just reiterate: This one is especially important because it determines whether I will be able to go to Stanford for their BMT program. There better be some progress! Naturally, I am sitting on the edge of my seat... metaphorically speaking. I find out the results tomorrow, and the next step of the big plan. That'll be an important day.

     The scan went well. Liz and I set two alarms because we were paranoid that something might make us miss this critical appointment, and I arrived there way early -- which was fine, because I got to amuse myself with my new blue Nintendo DS. The nurse checked my blood sugar level and asked me: "Did you have dessert last night?" Knowing that I was not supposed to eat or drink in the past 8 hours, I made it a point to emphasize that I obeyed the rules, and, in addition, did not have any dessert. She then asked me what I ate the night before. I told her, "Extremely spicy Mandarin Beef." Anyhow, the level was a tad high, but within acceptable range.
     She then injected the radioactive sugar and I asked her whether it was made at Lawrence Livermore Labs (since they have a cyclotron there). Apparently, everyone, including Livermore Labs, gets their Pet-CT sugar from a specialized place in Gilroy that makes nothing else.
     Then, I was to sit back and relax in this dark, and small room with an extremely comfy recliner. I fell asleep quickly, and had dreams where I was waiting in a dark Pet-CT room on a comfy recliner... except, the lights in the room were on and I didn't turn them on... I was panicking. I could turn them off, but then I would have to move. But, if I didn't turn them off, the nurse would come back and yell at me for turning them on in the first place. I would then wake up, fall asleep again, and have variations of the same dream.
     Then, after I was good and asleep, the nurse woke me up and told me to climb in the machine. A few minutes after the scan started, I fell asleep again. I mean, you can't wake someone up in deep REM and expect them to remain awake as you instruct them to lie down and remain perfectly still for 25 minutes. It's just not going to happen. Then problem was that there was microphones in the machine, so that the operator can talk to the patient. That was a problem because I caught myself snoring several times. Yes, I was snoring in the Pet-CT machine. The poor nurse... she probably had to put me on mute.
     Oh, and after the scan, the nurse asked me about my occupation. I told her I was a student, and she asked me when the fall semester started. I didn't realize it until then, but it was today. That kind of bummed me out.
     Anyhow... that's it for the scan. We'll find out the results tomorrow.

     Now, I know you all are just begging to elaborate further on my Nintendo DS. So, to appease the masses, I will do so now... It is super-awesome! I haven't been as excited about a toy like this for years now. The funny part is, I wasn't too excited about it as I purchased it -- I had to play it a bit to really appreciate it.
     (By the way, for the sake of record, Liz made me do it. So, I'm completely guilt-free for spending money on a toy.) :)
     I even got "Guitar Hero" for the DS -- which requires a strange little fretboard attachment. Then you take this stylus/pick and strum along to the music on the video game screen -- super cool.
     So, consider myself suitable distracted from all sorts of worries. I find comfort in the fact that, no matter where I am, I have complete freedom from boredom. Plus, having that thing in the hospital bed will help tremendously.

     Oh, and one last thing before I go... Last night, I had a huge craving for something spicy! Maybe it's the chemo; maybe it's my taste buds losing sensitivity. Anyhow, we went for Chinese, and I asked them to make my Mandarin beef extra spicy. They failed: it was pretty mild. But, they did include a bowl of pure Chinese pepper seed sauce. I dumped the whole thing on the beef and stirred it in. When the waiter returned, he was flabbergasted: "You put the whole thing in?!" It was awesome.
     As I ate more and more, the beef got hotter and hotter. Eventually, I reached painfully hot. It was great, and exactly what I wanted. I'm not usually into spicy foods, nor is my tolerance exemplary. Maybe it is the chemo.

[8-23-08] Worries vs. Sleep

2008-08-23T06:33:00.000-07:00

[6:32am]
     Part of the reason that I can't get back to sleep is because I keep worrying about things. Yes, yes, I'm supposed to be on vacation, but that's never been able to stop me from scrutinize the countless permutations of possible future events. I think I'm quite adept at worrying. :P

     So, what am I worrying about?

     A bit of background first: When I lost all my hair, I didn't actually lose all of my hair. There are these "baby" hair follicles that don't seem to be effected by the chemo. These are the follicles with really thin and light blond hair. So thin and light, that you wouldn't notice that I actually had hair until you looked really hard.

     So, of course, that leads right into the cancer that I'm worried about. And, yes, I know I am hypersensitive about it... but... I've noticed that some of my facial hair started to grow back. I'm getting a stubbly chin with those thick black hairs -- far different than those baby blond follicles. So, in a way, I was OK with the baby follicles not being killed -- they aren't normal hair. But these chin hairs, they are normal hair. I'm supposed to be losing hair, not gaining it!

     I'm probably looking waaaaaaay too far into it. But that's what I do. If I had a pet-CT machine in my closet, I'd do a scan every day. Since I don't, then I speculate on whatever I can find.

     Then there's the tumor itself. In the brief moments where I can feel it, it seems like I can feel it more recently. Of course, this can mean one of four things:
     1:It's all in your head.
     2:The tumor is growing.
     3:The tumor is the same size, but somehow easier to move (and thus be detected by me).
     4:See #1.

     Regardless, my faith in ICE has gone down since I last wrote about it. I'm not as optimistic that everything can be done in two cycles. I mean, without a doubt, there still is a tumor there. It sure doesn't seem like a 50% reduction to me. Of course, that could all just be benign tissue. So many variables...

     Four cycles *sigh*, I can handle that. At least that'll give us a chance to nag Stanford to do apheresis in tandem with ICE. I just want my re-birthday to come soon.

     The other thing I was worrying about was finances and whatnot. First off, withdrawing next semester means that I will lose a semester of financial aid eligibility. So, somehow, when I return to school, I'll have to find the money somewhere. Plus, I've got a huge amount of credit card debt. If I can get rid of that interest somehow, then maybe I can start saving up for that semester without financial aid.

     Ugh... then, in the Stanford BMT guide, it says to expect prescription costs of up to $10,000. Neupogen is expensive, I hear.

     Of course, through all of this, I have that voice that continually reminds me that there is a possibility I wont even be here in a while. In which case, I feel compelled to rack up more debt and go to Galapagos! But it's true -- it's really hard to think about 20 year repayment plans at a time like this.

     These are just some of the thoughts keeping me up.

[8-23-08] Blogging Strategy.

2008-08-23T05:56:00.000-07:00

[5:55am]
     I can't seem to get back to sleep, so here I am.

     First off, I was thinking about the nature of this blog. If you'll notice, the frequency of my posts has shifted from once (or more) daily to once every two days. Frankly, it's because I really haven't had all that much to talk about, especially regarding the Hodge. So, because the point of all this is to document my journey (fight, struggle, whatever...) with Hodgkin's Disease, I have to keep my entries somewhat focused. In other words, I can't post continually about what I ate that day (meat!), how much beer I drank (lots!), and what video games I played (Condemned, totally fun BTW). It's usually got to be about this whole disease, what I'm doing to fight it, how it effects me and those around me, and my thoughts regarding the whole thing in general.

     The other thing to consider, however, is what happens if I have large gaps of time with nothing to say or report regarding cancer? Probably unlikely, as it is such a huge part of my life now. But nevertheless, for the sake of consistency, this blog needs to be updated regularly.

     So, I have a simple strategy:
     Always post at least once every two days.

     That way, if I don't have much interesting/relevant to say, it is minimized. At the same time, the blog maintains consistency. I think this reveals a bit of my quirky side: to write a blog entry about writing blog entries, and detailing a strategy. Yes, I'm weird.

Nevertheless, I actually did have something to say this morning. But this entry got me side-tracked. So I'll make a new post for it.

[8-21-08] Vacation

2008-08-21T11:49:00.000-07:00

[11:47am]
     My appointment for the super important pet-CT scan is scheduled for Monday, the 25th. The following day, I will meet with an oncologist in Berkeley (mine remains on vacation) to discuss the next step. Will I have 2 more ICE treatments? Can I use the salvage ICE for apheresis, instead of waiting longer and using Cytoxan? When will Stanford begin their part? Hopefully, all these questions will be answered by then.

     Until then, I am on vacation. School is far away from here; treatment is far away from here. Until the 25th, there's not much I can fret about... or reason to do so. It's not just the distance -- it really feels as if the whole "cancer" thing is further from my mind, here. Plus, there's the whole "don't sweat the small stuff" feeling that arises when there's a diagnosis of this magnitude. So, basically, here I am, without a worry in the world... for the next 4 days. Until then: it's vacation.

     After the 25th? Who knows? Treatment could pick up pace (which I hope), or I could have yet more time to burn. Regardless, I'm not counting the month or so in Stanford in my vacation category -- that's probably not going to be a picnic.

     My current plan? To have a good time, of course. Tentatively, that also includes a new video game every day. :) Yesterday was Sid Meier's Civilization Revolution -- a pretty fun game where you strategically build and develop a civilization from scratch. Today is a game called Condemned -- I haven't yet played it, but it looks like some sort of horror/sci-fi adventure. Looks fun.

[5:49pm]
     I've been spending the day help Dan install a new bathtub. It's a lot of work, and I do get more tired easily, but it is nice to know that I'm still capable, ya know? Those hemoglobins aren't going to stay high forever.

[8-19-08] Getting Settled.

2008-08-19T13:52:00.000-07:00

[12:06pm]
     Now's the part where I get settled into my new home! First things first: establish the command center (i.e. computer + desk). It's actually a pretty big deal, since I have waaaay too many peripherals. Also, the desk was located up in the office, so you had a pregnant woman and a chemo kid lugging this desk through the brush. But we made it!
     So, I guess I'll stay here for a month or so, then head to Stanford. Then, who knows? I feel like somewhat of a nomad. Yet another good reason to live minimally. The strangest part is being out of school: what am I supposed to do with my spare time? When I was in the hospital, that was one thing. In a hospital, you're expected to slack off. Now, in my new home, I get that all too familiar feeling to start accomplishing things. Maybe I'll beef up on my coding skills a bit. Or...play xbox 360 games until my eyes fall out.

     On the cancer front, things are going well. The worst passes as you get out of the hospital. All that lingers now is a real lack of stamina and the feeling that I ate (and swallowed) several pennies. An odd feeling.

[3:51pm]
     Grades are in! I got an A- in Technical Writing! Woohoo!

[8-18-08] Moving!

2008-08-18T12:50:00.000-07:00

[12:49pm]
     I got discharged from the hospital at around 9:00am! One of the nurses I'm more familiar with, Janette, walked me out and got me a taxi...the hospital even paid for it! Quite nice. It was really sweet: She told me to "not come back, get a good pet scan, and go straight to Stanford." Then she gave me a hug.

     So then, I got some 7-11 nachos (which I've been craving tremendously), stopped by Liz's place, and began moving out!
Despite a strange taste in my mouth and a lot less energy, this was, perhaps, even easier than the first ICE session. Rock on! Of course, my nadir is in about 10 days, so we'll see how I'm feeling then. But for now, I feel great!

     Moving Out:
     It's sort of a tradition for me. I like to live simply, and move efficiently. So, here's my refined step-by-step guide to moving out, Austin-style:
     1:Throw away all trash.
     2:Put all your dirty laundry large garbage bags. Put all your clean laundry in different large garbage bags. Make sure you know which is which.
     3:Take all your books you have finished reading (and don't use for reference) and sell them. Take all your CDs you've copied to mp3, or don't listen to anymore, and sell them. Sell all your xbox360 games you've already played.
     4:Arrange your: "I'll need this immediately where I will live" section. Label this #1.
     5:Arrange your: "I'll need this nearby" section. Label this #2.
     6:Arrange your: "I'll need this at some point, but I'm willing to drive to storage for it" section. Label this #3.
     7:Throw away everything that doesn't fit in any of those three sections -- basically anything you don't need.
     8:Sort items into the three sections. If delicate, put in banker's box. Else, just put in a labeled trash bag.
     9:Computer always goes last.

     And that's it! You've moved out in 3 hours, and move-in will be even easier. Just put #1 in your room, #2 in the garage, and #3 in storage. Plus, you've gotten rid of a lot of useless stuff and simplified your life.

     So now I'm just going to waste time on the internet until Dan get's here. And, yeah, I'm not driving my motorcycle to Aptos. We'll pick it up later.

[8-17-08] ICE, Day Four

2008-08-17T11:36:00.000-07:00

[11:36am]
     I felt like sleeping most of today, so I did. And it was good; I just woke up. *yawn* They're starting the chemo in a few minutes, so that means I should be out of here by, say, 12pm on Monday! Woohoo!
     My head looks very "spotted" this morning. I haven't been removing head hair, but it seems to naturally fall out in spots. Fascinating.

[12:10pm]
     Sitting around the hospital all day, you become familiar with the nurses and get to know them. You also get to easily recognize how skilled and thorough they are. Some nurses forget to have the ifosfamide and the saline pump simultaneously and two separate pumps. Some, tape the tubing on your chest oddly so that it occludes. Some, forget to check the bandage holding your port, and allow it to nearly fall off before I have to say something. Lots of mistakes all over the place; nothing super critical, however, but after a while you notice these things.
     One nurse, however, is just simply exceptional. And get this: he is a Nurse Assistant, not a Registered Nurse, like most of those handling chemo around here. He hasn't made a single mistake, he is extremely thorough, is extremely polite, and does things like make my bed (which no one else here does) or pick up a few bits of trash about the room. He's also the nurse yesterday that fronted my take-out bill. His name is Jibril, and he's been a nurse in the US for only 5 years (previously in Samoa). Get this: he chooses to be a nurse assistant, because he's afraid his language barrier may cause trouble at a critical moment or something. His rank in Samoa was higher. Anyhow, I just wanted to say a few good words about him because he's awesome.

[3:20pm]
     Great news! I just saw my doctor, and I asked her if we could expedite the discharge process. She said that she'll get all the paperwork done tonight, and that I could leave when I choose tomorrow morning. That'll make moving out of my dorm much easier. I could get everything prepared before transport arrives.
     On the hair front, it's 98% gone. I just got annoyed at it falling out all over the place, so I spent about 10 minutes just running my hands through it. It fell like snow. There are still some odd spots that wont come out, but, all in all, it looks better than it did. And feels better.

Watching: Austin Powers marathon!

[8-16-08] ICE, Day Three

2008-08-16T09:21:00.000-07:00

[9:21am]
     Got a good night's sleep. So nice. It's hard to get to sleep in a strange place, on a strange bed, with random people waking you up at random times of the night. Sleeping pills are necessary to get a full night's sleep, at least for me.
     Anyhow, I did the normal routine. Since I have to water-protect my port, I wash my hair in the sink. And, I just could not believe the amount that came out! It looks like I'm going to lose my 10 day bet -- it's going to be like 3 or 4 more days, I believe. I already have bald streaks on the side of my head. Interesting to note where the hair is first lost.
     Also, they've been giving me some "magic mouthwash" for some of the sores I have under the tongue. It's not all that bad, just really annoying. Makes saying a few words and eating Cheetos a little painful. So, even though my case is about as mild as it gets, I always take the path of least pain. Apparently, it's due to a low white blood count (though mine is not *that* low).
The downside to the mouthwash, is that it makes me feel a bit queasy for an hour or so afterwards.

[10:45am]
     It seems I've been talking so much about events, that I haven't said much on how I am feeling about all this. The cancer, the hospitalization, the hair loss, the chemo, withdrawal from school, scary BMT, moving in with family, and general emotional state. So, I thought I'd say a few words about it. In general, I'm doing absolutely fine with all this. Mood is good. Don't worry, I'll be sure to complain or be pessimistic when the time comes. But, right now, it's all good.

Specifically,
     The Cancer: I'm confident that ICE will show enough progress after 2 or 4 cycles to send me to the BMT program. My belief that 2 cycles will get it done is going up with time. I believe the BMT will send me to a remission, with a decent chance of a permanent cure (although I recognize the chance of a relapse or secondary cancer). Also, I am fairly certain that I will have some long-term side-effects maybe 10 years or so down the road. But I am also sure that they can be handled with proper healthy behavior, and medical upkeep.
     The BMT: Looking forward to it; it should be interesting. I know it will be totally tough, and I'll be pretty decrepit at times... but, I expect the BMT to the coup de grâce for the evil tumor, and that's exciting. Liz told me not to use the word "burden," so instead I will say: "I want to minimize how much of a workload I am to my family through all of this. I totally recognize that this is tough on everyone, and don't want anyone to feel any obligation whatsoever."
     Hair Loss: It sucks, but I'm cool with it. Kinda neat, in a way. But, then again, it's like wearing a hospital gown: an indication to the world that you are sick. I don't like that.
     Hospital: Things are great here. I do feel a bit trapped, but with the internet, and movies, and my book, I'm pretty well entertained. Food quality and quantity needs a little boost though. I'm starting to get into this novel, so I look forward to getting totally lost in a fantasy series (thanks, Liz!).
     Chemo: Starting to feel the effects of the chemo again; getting flashbacks to the harder parts of the Stanford V. But, still, I'm handling it extremely well. So, I'm not bothered much by it...yet.
     Withdrawal from School: I'm more bothered by this, than by anything else. School represents moving forward in life. Not only that, but redemption. Having to withdraw previously, and basically wasting away my potential for three years has really taught me the negative aspects of myself. Doing well, being productive, and generally being positive to those around you are what it's all about. That's why graduation from Berkeley is so profoundly important to me. I know that a bit hard on myself, but that's the plain truth of how I feel.
     Staying in school (finishing fall and summer sessions) while undergoing chemo and cancer treatment has been a personal victory for me. I'm proud of that. Having to withdraw due to cancer evens the score. It is a battle. :P
     Moving in with family: Same "workload" considerations as before. I'm really looking forward to their company. Just yet another example of how awesome my family is. I mean, I think most people envision long time spent with their family with some amount of dread. But we're a tightly knit group. We're friends; we hang out for no occasion whatsoever. Awesome and special. The downside is that I'll see Liz less frequently.

     So, that's the status report. All in all, things are quite good.

[11:40am]
     Heh heh. I just ordered more Japanese food. I love spoiling myself... might as well. :)

[12:51pm]
     Food Delivery Fiasco: About ten minutes after I ordered the Japanese food, I was sent to have my pulmonary function test. I thought it would be a short affair, but it actually took about 25 minutes. But priorities, you know? A PFT is *way* more important than Japanese food. Anyhow, so about 20 minutes into the PFT, my nurse runs up to the room I am in and says: "Did you order take-out? There's a guy with takeout waiting next to your room." I asked the nurse if he could take some money out of my wallet, left in the room. They nice guy just asked me if I had enough money, then said I could pay him back. Super cool of him. I imagine the delivery guy was quite upset, though. He was tipped well, but I don't believe they'll be delivering to my room again. [Edit: Actually, the nurse thought my tip was too big. Gave him a 3 dollar tip on a 22 dollar meal -- ouch!] :P
     On a good note, it looks like I've passed the PFT with flying colors. So, nothing's stopping me from Stanford BMT!
     Oh, and when I was sorting through my delivery, a food-service person came in because I forgot to turn in my menu. I was standing next to the window when she asked, "Do you know where the patient is?" I thought that was awesome.

[2:06pm]
     Chemo is starting a little late today. Time for a little pre-chemo Ativan nap.

[12:35pm]
     Just shaved the last of my facial hair with my fingers. Looks like I was short on the bet by about 8 days -- I've definitely hit the 50% marker. Good night, hair.

[8-15-08] ICE, Day Two

2008-08-15T07:15:00.000-07:00

[7:17am]
     So, I asked for a sleeping pill last night because I just had that "feeling" that sleep was not going to come easily. They obliged and gave me an Ambien. Alas, the pill was not continuous release, so I got 4 hours sleep on the dot. Still wish I could get more sleep...
     Barbara crashed over here last night. They got her a lazyboy-type long chair and everything, so she looked comfortable. Of course, without the chair, she would've found a way to sleep in some sort of crazy configuration anyways -- she has a talent for that. Anyways, since I was up early (sorry Barbara!), I finished my morning shower/routine quite early today. While I was washing, I noticed that there was no armpit hair! None, whatsoever! Did that happen overnight? How can that happen so suddenly? I think I retained some of that hair through the Stanford V.
     Proudly, I show Barbara -- "Look, no armpit hair!" I say. Perhaps it wasn't on the same level as passing a tough course or getting an "A" on a term paper, but, nevertheless, I thought it was pretty darn cool! See, I never liked that hair -- it's totally useless. If it weren't for all the work required, I'd probably get rid of it. ICE is kicking ass, methinks.
     Again, it the whole: "Austin, there's no empirical evidence to support your conclusion." thing. Nevertheless, I'm starting to feel more optimistic about this particular treatment. Perhaps two cycles wont kill the tumor completely, but I'm starting to believe that a 50%-75% reduction is likely. Still, if it goes so well, why not go for four cycles and kill it completely?
     As I heard it explained, they don't want to give any unecessary chemo. Not for side-effects and whatnot, but because it seems your body becomes more chemo-resistant as you are exposed to more of it. Since the "conditioning chemo" part of the BMT is the most important, it is better to have your body less resistant to the BIGGER chemo than it is to have a smaller tumor and greater resistance. It does seem like an iffy trade-off, and my doctor better have a good reason to support her choice. Still, it makes some sense. But I always liked the idea of going into a BMT while technically in remission. :P

[2:34pm]
     Good news! My Pet-CT scan has been scheduled for the 25th, my Pet-CT follow-up (to decide how to progress) is scheduled for the 26th, and I should get that pulmonary function test (that they forgot to do last time I was hospitalized) some time this weekend. More good news: Chemo started on schedule today, and my counts are slightly up from yesterday (for some reason), so I should be feeling great! However, I'm actually feeling a little worn. And, for the first time, I went a little "Pavlov's Dog" when seeing the chemo enter the room. Light, light, anticipatory nausea. All the anti-emetics soon worked their magic.
     I'm gonna go try and shave my little 10-day mustache with my fingers now. Just because. :P

[2:47pm]
     Wow, it worked! My mustache is totally gone! Creepy. Poor Gillette's gonna lose some money -- this is baby smooth! Heh, I wonder if it'll confuse any of the nurses. :P

[5:35pm]
     *Ugly Side Effect Warning* Embarrassing to admit, but I must report all side effects. Got about a teaspoon blood in the stool, so that's a bit of concern, especially if my platelet counts go too far south. Also, it's apparently important to distinguish that this was accomplished without strain (i.e. constipation). Nurse plans to add a stool softener, and will see if that helps. But they don't look too concerned (I'm certainly a bit spooked!), so that's a relief.

     On a more pleasant note, they just started the ifosfamide, and I swear I can taste it! Yum, yum.

[6:50pm]
     Guh. Looks like it usually takes a few days with ICE for the nausea to kick in. Last time it was the third day. This time: the second day. For some reason, the meds to combat it haven't been pre-approved for "as needed", so I have to wait until a doctor can be contacted. S'ok though, it's not too bad. But with stuff like this, it's always best to attack early.

[8-15-08] The "Don't Give Me Less Chemo Study."

2008-08-15T07:00:00.000-07:00

Here's the study: The Importance of Planned Dose of Chemotherapy on Time: Do We Need to Change Our Clinical Practice?

The conclusion of the study:

"When chemotherapy is being given with curative intent, we believe that it is important to avoid reductions and delays in chemotherapy if the best possible outcome is to be achieved, although this is not possible for all patients."

I encourage anyone to read the study first and form their own opinions, before listening to my views.

My belief, is that the study may be controversial. No one wants to be told that their oncologist may have made a sub-optimal decision regarding their treatment. Basically, a dose reduction or a delayed dose results in a reduction in the relative dose intensity (RDI: percentage dose relative to the standard dose) of the regimen. The study looks, retroactively, at the survival results when a group of patients are 50% RDI or 70% RDI. The findings: There is a significant reduction in patient survival.
My belief, is that the study makes sense. Accordingly, I will always resist, to the best of my ability, and dose reduction or delayed treatment. Bring on the neupogen!

Note: I'm not saying that I resist having only 2 ICE treatments. I am saying, that if those two treatments were a month apart or at reduced doses, then I would have a problem.

[8-14-08] ICE, Day One

2008-08-14T02:52:00.000-07:00

[2:54am]
     This bed is inferior to the one I had previously. With all beds, there is a finite amount of time that it can function before some type of back pain is present. The last one was a miraculous 11.5 hours or so! As it so happens, I have just finished my objective evaluation of this current bed. My conclusion? A standard 7-hours.
     Fortunately, I have just been fed some Vicodin in an effort to add more "fluff" to my mattress. We shall see. Cardboard plus Vicodin does not a Tempurpedic make. Interesting to note that they decided to allow me "as-needed" access to the good stuff. I guess when I told them about that unfortunate ER visit a few days ago, they thought it might be important to consider possible pain. Glad they did. Previously, I might have eaten a few Tylenol and waited like a good boy. Now, with all other crappiness in-bound, I don't have the luxury or time to be a "good boy." Fix it, I say! :P

     Scalp feels a bit strange. So, I just gave myself the good-old hair-pull test. It's started. Onset is more sudden (just noticed it now!) and the amount of hair lost per pinch is FAR greater than last time. This should be interesting! Bets are being taken! Can you guess the hair halflife (Time it takes to lose 50% of current hair)? My current bet is 1.5 weeks.

[8:54am]
     Ah, nothing like a fresh shower to start your day properly! It was quite difficult, actually. For example, to wash one's hair while simultaneously holding plastic tubing and maneuvering so that one's port does not get wet...is quite difficult. I got water everywhere. Still, mission complete.
     I am so ready for chemo.
     By the way, I was thinking about making the title of my previous post a trivia challenge! Basically, some video game quote was swimming in my heard yesterday, and I was wondering if any of the Kentucky gamers I know could guess it. The title refers to a video game quote, specifically for the Nintendo. So what game was it?

[10:15am]
     Just started me on the pre-meds: Ativan, Zolfran, and Decadron. Chemo ETA: 20 mins.
     Ah man, I'm losing the scruffy little beard hear that I've spent the last two weeks cultivating! Liz was telling me how she liked it, so I've been working on it. I had the impression that the slower growing the hair was, the more resistant it would be to falling out. Accordingly, I visualized myself bald, but with facial hair for a time. Nope, not gonna happen. Bummer. That might've been a "tough" look. All of my hair, with the exception of eyebrows and eyelashes, is being lost at a ridiculous pace. It's cool! I mean, yeah, it sucks and everything. But it's inevitable, and quite an odd experience! In other words: kinda neat. I do find, however, that I have to resist the urge to become a Trichotillomaniac. It can be addictive.
     I know there isn't empirical evidence to back this up. But, nevertheless, I find this reassuring. I mean, chemo kills rapidly growing cells, yes? Stanford V did not kill the tumor, and it only killed some of the rapidly-growing hair cells. ICE, on the other hand, is just brutally killing every hair cell in existence. What can I conclude it will do to the tumor, then? Hmmm? :P

[12:23pm]
     Not taking a chance with lunch today! I just placed an order for delivery from the local Japanese restaurant -- I feel so decadent!! Mmmmm...
     On another note, chemo is pumping as-scheduled. Finally!

[2:20pm]
     Just woke up from my food-induced coma. That Japanese food: BEST IDEA EVAH! I'm so happy. They came in with HUGE servings -- I actually couldn't eat in all. Oh well, teryaki for later! While I was eating the nurse came in with the hospital lunch... I felt a bit guilty: "oh, I'll eat your food too!" I ate the pears.
     On the chemo-front: I'm getting a bit of what feels like a headache. Meh.

[8:53pm]
     So, my first day's been pretty uneventful. No news is usually good news. All chemo was delivered: cisplatin, hydration, mesna, ifosfamide, etoposide, mesna, with no side effects. Except for a weird taste and the mouth and an odd (but perfectly acceptable) "feeling" in the stomach; kinda like "this is not nominal, but ok nonetheless." All in all, well tolerated...
     Except, it looks like that headache I described earlier transformed into a fever. Just a few moments ago, I realized that I had that all-too-familiar "burning eyes" sensation that has always been my personal fever indicator. It sounds worse than it is: just a kinda warm, uncomfortable, headachey feeling in the eyes. Anyhow, I'm benchmarked at 100.0F on the dot. But, I'm sure it will go away -- I just had the etoposide, and I have experienced temporary fevers due to the drug before.

[8-13-08] No ICE? What a drag.

2008-08-13T10:35:00.000-07:00

[10:36am]
     I just got settled in! I set up my laptop, plugged in Barbara's hard drive, put away my clothes, and politely refused to wear a gown. I mean, it doesn't make any sense! I want to feel human, not like some sick person! Granted, I am sick... but that doesn't mean I have to feel sick!

     It's also funny that they all seem to think that, without a gown, I will choose to instead sleep in my jeans. "We have some pajama pants you can wear..." Maybe they're extremely prudish?
     But it's like, "H-e-l-l-o!! I have Hodgkin's Lymphoma...anyone know what that means...anyone...anyone...Bueller?" Night sweats! And if you think I'm a going nite-nite in anything other than my undies, you got another thing coming!

     So, no gown. :) I am, of course, wearing clothes :P

[12:28pm]
     Red Warrior needs food badly!
     Hmmm... I'm such a pig. Nurse is trying to explain all the upcoming chemo and side effects, and I'm like: "Yes, yes, but when is the food coming?" and she's like: "Well, usually lun..." and I'm like: "YES, FOOD! FOOD FOOD FOOD!"
     *ahem* Yes. The point is that I'm not used to having to wait for food. I suppose I am spoiled in that regard. At home, when I am hungry, I eat. Simple as that. Accordingly, it has turned into somewhat of a personal obsession over the past thirty minutes. I think to myself: "I wonder what's going to be on the menu...French fries? No...they wouldn't dare...At least some type of desert object though...Thats good...But will they remember that I usually eat double portions? Or will they screw me on the first day?" Arrrgh! So much stress!

[1:24pm]
     Hmmm....I found a Japanese Restaurant that will deliver here. I hope the staff here wouldn't consider that rude...

[1:47pm]
     Ah, I've been fed. All is right in the world. Chemo hasn't started yet, but my lab results are in!

WBC: 5.1 [Nom: 4.8 to 10.8]
RBC: 3.8 [Nom: 4.7 to 6.1]
HGB: 11.7 [Nom: 14 to 18]

Slightly anemic, but not immunosuppressed. Chemo is a go!

[3:43pm]
     Chemo is not a go! There hasn't been any chemo orders faxed from Irwin's office. The pharmacy closes at 4:30pm. No orders before 4:30pm means no chemo today. In other words, the whole day will be pointless. Bah, more stress. It's not fighting cancer, it's fighting to get treated!

[4:00pm]
     Dr. C isn't going to send the orders today. I have no clue why. No chemo today. What a waste. Bah.
     The nurse came in and was furious!! It was awesome! She said something about "kicking" my "doctor's butt" and then immediately apologized for being "extremely unprofessional." She explained that she was a patient advocate, and things like these especially infuriated her. Rock on!
     She then gave me a $10 cafeteria voucher for all the inconvenience. Kinda silly to be spending thousands and thousands for hospital care, delaying your life-saving chemo, and wasting an entire day, only to be given a little $10 voucher. I got a bacon cheeseburger and fries. It was worth it :P

     Plus, the good news is that they are going to start the hydration process in a couple of hours. That process takes at least 5 hours. The entire day won't be completely a waste, in other words. So, getting that out of the way, I will be able to start my day with a fresh cup of chemo.

Watching: League of Gentlemen (Silly BBC Comedy)

[8-12-08] Troubleshooting Life

2008-08-12T06:07:00.000-07:00

[6:06am]
     A little under four hours until the final is due... the pressure is on. Can he handle it? The judges are in-conference... they seem to indicate that...yes, yes he can indeed handle the pressure. The Swiss judge is citing a July term paper in which the protagonist chose to write on his own blog as a method of last-minute procrastination. It looks like the same strategy is in play here... how will it turn out?

[8:00am]
     Mmmm, just had a three-egg breakfast with potatoes and italian sausage. Large mocha for added caffeine. Yummy. Now what was I doing?

[9:28am]
     Just finished term paper! Wahoo! If anyone is curious about space-based solar power, it will be available at: here for a day or so.

[12:10pm]
     Bah! One hurdle ends; another begins... I just got a call from Dr. Irwin's office: One of the nurses (not Becky) just wanted to confirm a pet-CT scan for the 19th! That's too early! My ICE treatment is scheduled to go from tomorrow until Sunday -- more time needs to pass before a scan can be completed... Or *is* my ICE treatment scheduled at all?
     Just to be sure, I ask the nurse... "Oh, your treatment is scheduled for the 26th." WTF?!?!?! I'd like it to be known that I have mercilessly *insisted* to everyone that will listen that my ICE treatment starts tomorrow. Each time, both doctors and nurses have agreed. So again, wtf is going on? Grrr...
     *sigh* I really wanted to just come home and relax... I finished the term paper, the class is over: I should feel good! Now everything is up in the air. They give me control over one aspect of my treatment: 2 week, or 3 week intervals between ICE. Determinedly, I choose the 2 week interval, thus convincing myself (through cognitive dissonance) that the increased neutropenic risks associated with a 2 week interval is worth the added blow to my evil tumor. In fact, I could delude myself into thinking that treatment occurring just 1 week earlier would cause a net reduction between 50 and 75% (because there is no time allowed to re-grow)! In that case, the ICE treatment has yielded sufficient results and I can proceed with a bone marrow transplant one month earlier! Perhaps that one month will save my life!
     Oh wait.. They accidentally scheduled me for ICE a week from now, instead of tomorrow. I see. Scratch all that then. Grr.

[1:38pm]
     Ahhhh, relief... Please excuse my momentary psychosis. All is right in the world. Becky has confirmed a 9:00-9:30am arrival time to summit hospital for ICE treatment for tomorrow, the 13th. There was some confusion about a mysteriously early pet-CT scan. It was not Becky's fault, and she is looking into it. Good.. Good. Pulse returning to normal...

[4:12pm]
     I'm off to go buy a nice robe for tomorrow. Down to hospital gowns! Maybe I'll be able to find those fuzzy Odie slippers too. :P

[5:46pm]
     Can you believe it?? Bed Bath and Beyond refuses to sell bathrobes for men! I guess Hugh Hefner has gone out of vogue. Oh well, I'm probably more comfy in pants anyhow. Truthfully, I'm just trying to find things to occupy my time until Christmas morning.